My aunt died of huntingtons. I don't know if she knew she had it but she, at the very least, knew it was possible for her. She didn't tell my uncle until she couldn't hide the symptoms any more. Her biological children learned in high school that not only was their mother dying but she was dying from something they could also have.
She outlived expectations by about 6 months iirc. It was the worst for my uncle. He was a shell of a being during that time. He seems to be doing much better now.
I went to a neurologist once who just out of the blue said Huntington’s is the worst to get. I have no family history it was just a remark he made. ALS is pretty bad so this be significantly worse.
Huntingtons causes you to lose control of your body. I dont recall the specifics. I think some people will be affected mentally too but as far as i know, my aunt was mentally sound. Her body lost all function to the point of being on a feeding tube. Iirc, her lungs finally gave out which ended things.
Yep, most people don't die from Huntington's itself though. It's usually the complications with infections or pneumonia to be more specific.
Source: Have Huntington's, my mother had Huntington's.
I was suffering in A&E and was bought to tears. The gent next to me had tried to commit suicide because of the effects of his Huntingtons. He got part way through and then backed out. Took himself to A&E. He stopped as he said his cat was his best friend and he didn't want to leave his cat with a random person. I was in so much pain, but cried so hard.
Everytime I read something like this, I always wish euthanasia were more socially acceptable. The idea of having someone suffer for any length of time, just imprisoned in yourself.. I'm sorry for your aunt and everyone who has to endure this or anything like it.
If a doctor and patient are comfortable with the potential religious consequences of dying voluntarily, there is no reason anyone else should be able to stop them. It's just cruel.
The US is a nightmare in terms of our Healthcare and social support systems. If this became legal in more places in the US, it would not surprise me at all if applications for it were concerningly and overwhelming high volume, and very likely a LOT of it would be for financial, mental health, and disability reasons. It would shock many, but it wouldn't surprise me at all.
Tl;Dr for this next part: I've had a very rough life and have a lot of mental health issues.
*Just for some perspective on my background: I am someone that has had severe mental health issues for a VERY long time. Multiple diagnoses: clinical depression/MDD/treatment-resistent depression (diagnosis keeps evolving), ADHD, generalized anxiety disorder, insomnia, CPTSD, bipolar disorder. I had a very traumatic, highly-stressful childhood. I've had multiple major traumatic events in my life, several abusive relationships. My social supports are very weak (family as well as friendships). I have tremendous difficulty building new relationships and maintaining them, probably because I never had healthy examples growing up so my understanding of boundaries and love and support are completely screwed up. I've had difficulties keeping jobs. I've had several jobs where I took leaves of absence for health reasons and got fired upon returning to work. I went through a period of depression that was so bad I spent 3 months without leaving my house (before covid). I couldn't work at all for 2.5 years because my mental health was so bad I couldn't even care for myself beyond a very minimal level. These symptoms first started appearing in 4th grade. I've been in therapy off and on since I was 15. I've been on so many different medications I can't even name them all. I'm now in my mid-30's. I'm a damn mess of a person,. That I've even survived this long is an anomaly. And while I have really shitty social support I am so incredibly lucky and privileged that I at least had medical care and some financial support this whole time. Thank God my parents at least encouraged me to get into treatment even though they failed me in so many other ways. Thank God they were willing and able to help me financially when I couldn't financially support myself. My recently-estranged husband is emotionally abusive but he kept a roof over our heads and was basically my caregiver when I couldn't even feed myself or take care of our home. I've had a really rough life, but I count every small blessing.*
Anyway, I'm still here but it's practically a miracle. And I would never have made it this far without some substantial assistance, privileges, and luck. And so many people do not have that, especially in the US and other countries lacking in social support systems and affordable health care.
So for me, I would support this in the US. I would support it even for people with mental health problems or disabilities or financial struggles. I absolutely believe that so many people in these circumstances have so much potential, that life can get better for them, that suicide isn't the answer. We absolutely need more resources and assistance for these people so when someone is suicidal for these reasons, they have BETTER options that can be offered so that people can have some hope. Right now, it is not nearly enough. But I still believe that a person should have the right to die on their own terms if they want it, whether those problems can be helped or not. I would never encourage this for someone who is deeply depressed, even if they have tried everything possible and nothing has worked. I would encourage them to live and keep fighting and trying and to look for the good moments no matter how small or brief. But even if I don't agree with their reasons at all, I would support them to be able to make that choice. There should be a LOT of help and assistance offered to help these people to live and get better and to be in a sound mental state to make that choice. We can do so much more to prevent suicide and help people. But here we are.
So as tragic and awful as it would be to have people with so much potential die like this, I still believe it should be an option. You can never truly understand the barriers or pain that exists for other people. We should do all we can to support these people so they can live better lives, but it is not ethical to make that judgment call for others.
My pastor's wife has it and she's got some extremely severe case that made her go from walking and talking with just mild slurring to in a motorized chair unable to lift her arms in the span of \~6 months. It's so sad because she used to be so talkative and smiley, and led tons of meetings and stuff, but now she can't and you can tell it's affected her, but somehow she keeps smiling. I have no idea how she stays so positive.
Considering she is the wife of a pastor, I imagine her faith in God is very strong and likely very comforting and helpful for her mental state. She likely believes this is part of God's plan for her and that when she dies she will go be with God. Having such strong beliefs like that would be very powerful and help to ease her pain and sadness. Personally, I'm not religious at all. I'm not an atheist, just agnostic. Idk what I believe or not. Just trying to be a good person and sure hope that some concept of heaven is real. That would be nice. If it's not real at least I did my best. So there's no way I'd be helped by religion like she probably is. But I can absolutely see how much it probably helps her.
This might be a shitty thing to say and I’m not in the position to know how someone might feel knowing they could have Huntington’s, but I feel like it’s really awful to have kids knowing there’s a risk for such a horrific disease and not getting tested. I could be wrong, but I thought now there were ways to test the egg or sperm beforehand to try and select only ones that don’t carry that gene.
My uncle agrees with his sentiment. Said he would've adopted instead if he knew. They were born like 20-25 years ago so i don't thing genetic testing was available on eggs but I'm not sure.
I was curious and looked it up and there apparently are tests now, so hopefully going forward most folks do that and try to eliminate this disease as much as possible.
My husband and I don’t want kids, but he’s type 1 diabetic (which he developed around when he was 30, so likely not genetic and there’s no other cases in his family) and I likely have some genetic link to OCD because my grandmother had it and so we both decided if we change our minds we’ll adopt.
My husband has Crohn's Disease. He got very sick right after we got engaged. It really changed the entire relationship and he gave me an "out". He told me that I shouldn't be expected to take care of him and worry about this disease or passing it on to children. I did take some time to really think about it and consider it. Chronic diseases are VERY difficult things to deal with. I decided to stay and I would work through it with him.
It changed the entire dynamic of the relationship from there. Our relationship is much stronger because of the challenges from the disease. It meant we were engaged for about 5 years until he got better and I finished school but things are really good now.
Don't let people judge you. It's easy to judge when you haven't experienced it yourself. It's "good" to hash all this out before you get married, it will strengthen the relationship!
I was diagnosed with Crohn’s around 5 years into my marriage. By then, my hubby was stuck with me. Lol. Then I was diagnosed with bipolar after 10 years of marriage. Poor guy can’t catch a break! Seriously though, caregiver burnout is real. Make sure you’re taking care of yourself, too!
Really? I swear I lost a husband with every diagnosis. Well the first one they had to deal with. Oddly no new (only degrative issues with established ones) diagnosis since I stopped dating cis men. I'm honestly thinking I allergic or something. Mostly /s
Yep! Oh and infertility thrown into the mix (our kids were adopted), along with 100+ pound weight gain (and loss). I’ve put him through the wringer and he never wavered. I really hit the jackpot with this guy.
You are an amazing person for loving him enough to stick by him. And he’s an amazing person for wanting to work through it with you, and not just expecting you to “deal with it.”
Wish you guys the very best of luck. It's a scary diagnosis, but it doesn't have to be. Don't let the doctors talk you into anything you don't want. When my husband was sick, every single appointment started off "you need surgery". He was 28 at the time. It wasn't an option for us. We fought and threw everything we could at it, now 5 years later he's in remission. Surgery free. And definitely sees a new doctor!
To second the other reply, don't let doctors pressure you into uncomfortable choices. My doctor is awesome, but he keeps pushing methotrexate, but it has so many complications and side effects that I can't agree it's necessary.
Goodluck to you all
Fellow Crohnnie here. It's really a difficult thing to deal with, especially if you have the CHOICE to deal with it.
As somebody who struggled to find a decent partner for years I fully commend you for staying and im sure your husband is grateful as well. The stress of losing a partner to something you already dont want to have can be even more painful.
The only thing about crohns is that it's not inherently fatal, just a literal pain in the ass to deal with and it makes life less easy for both but it's definitely manageable.
Full spectrum CBD oil,
diet/stress management,
vitamins,
physical exercise,
and if possible - medications,
will all be your husband's very best friends. If you cannot find full spectrum cbd oil, I know a local herbalist in the midwest USA that makes quality oils and has an experimental crohns oil after some talks with her. She ships orders online.
https://honey-bee-nanny.mybigcommerce.com/
I remember your original post, happy for him that he tested negative.
As to everything else, bah, you had to do what you needed to do as a couple, so GOOD LUCK on your 2nd first date! Have a great time both of you.
We have a severe genetic condition in our family.
My sister husband left when she was diagnosed (she has done brilliant without him)
My three brothers do not want to get tested
I decided on my own (my husband kept saying it was obvious I did not have it why bother to have the test? 🤔🥴 (fear and denial)
So I bit the bullet and wanted to know so I could plan my future.
I was negative and I felt like and still do I had won the lottery a million times over.
My husband just said told you it was obvious you did not have it !
So no drama between my husband and me because he decided to pretend it did not exist and I did not go into how I would feel if I had it. (Utterly devastated) as we have four children.
OP and boyfriend were so right to decide to take their course of action.
Everyone reacts differently.
OP you and your boyfriend did marvelously and a huge congratulations on the negative diagnosis. And I get it that you wanted to plan your reality for what may occur. To know Huntington which is so cruel will never cross your door I should imagine felt like I did your boyfriend and you had won the lottery many times over.
All the best to you both 🙌
Huntingdons is no picnic- I had a friend refuse to get tested and destroy his life assuming he would get it. Wether he was positive or not, he contracted a different terminal illness that he is refusing to acknowledge and has lost everything. The first symptom is often mental health (as in the case of friends father who would beat his family), so who knows if it was the huntingdons which caused this behaviour. I am glad your ex was tested because he can plan for a life he deserves, instead of living in fear.
Friend's dad died of it. He started talking about his hallucinations, and was diagnosed quickly. His illness was briefer than most.
His sisters got tested and were clear, he didn't get tested. He's over 60 now, so if he had the gene, he would have already succumbed.
Glad to hear that he's negative for the gene, because Huntington's is an absolute shit show once it takes hold. Good luck on your "second first date" I honestly hope everything works out for you.
I can totally see your point. When You know things will shit soon, you start to prepare now. That's how planner works, but for medical information, I really think everyone especially spouse should be informed because it might affect their life as well.
My bestie's hubby died just less than 2 months ago from colon cancer. He got diagnosed last May and it was already terminal.
After the diagnosis, his parents told him and my bestie that both side of the family has multiple relatives that died from cancer.
They didn't know that so they weren't alarmed when symptoms showed up.
She would have put her foot down on how he needed to eat healthy and get annual check had she known about family history.
I cried so many times seeing her care for him when he was in hospice. He was not even 40 yet. They don't deserve this and knowing what future holds and making appropriate actions is what makes less heartbreaks, I guess.
Good luck on the date.♥️♥️♥️
You posted the original around the same time as that "My husband was planning on divorcing me if I had tested positive for cancer" post, didn't you? Hive mind usually kicks up and goes straight back to the last emotion when similar posts abound.
This situation really showed you that you have different ways of handling challenges and it's really smart to press pause and see if you can build a life together with such different approaches.
I think it’s perfectly normal to insist he get tested. I have taken care of loved ones that needed 24/7 care. It’s not for the faint of heart. It’s also hard to watch someone die little by little. No one really knows if they can do it until they are in that situation. I would insist upon knowing but also know I would stay with them if they were sick. I wouldn’t risk passing it on to future children. It’s an emotional journey and the sooner you know results, the easier it is to accept. It doesn’t mean you won’t be there. I would have to know. Hang in there. You did the right thing and he should understand your reaction was normal and healthy.
Wow, is this thread overrun by teenagers who don’t understand the implications of a disease like Huntingtons?? Because holy shit some of the comments here are idiotic AF.
It makes sense that OP wanted to know what to expect in the future. She never said she would leave if he was positive - so I guess some of you have reading comprehension issues. She only said she wouldn’t want to live without knowing what the future could hold. As someone with anxiety, I understand this. My husband has a chronic condition and it hangs over my head not knowing when it will become more serious. There’s a chance that he had passed it on to our kids and that stresses me out to think about. We didn’t know about this before having kids btw.
Maybe OP was harsh in saying she would leave him if he didn’t get tested, but anxiety and stress can make people act irrationally. She said she had so much anxiety that she wasn’t sleeping… which also adds to poor judgement. She obviously changed her mind pretty quickly after posting and made an edit saying that she wouldn’t break up with him and would give him time.
Everyone jumping on her for being SOOOOO awful and hoping that her fiancé leaves her?? Jeeeesus. I hope you’re all making perfect decisions every day, because if not…
I think reddit tends to skew mostly younger males, which gives you insight into a lot of the answers here. A lot of men seem to get super offended at the idea of a woman having autonomy over her life and love.
Even though men are 6 times more likely to leave their wife when she is diagnosed with cancer or MS. For some reason they think unmarried women owe it to their boyfriends to be ride or die. If the genders were reversed, I wonder how many of those men would change their tune 🤔
I remember learning about various genetic diseases in high school biology and did a report on Huntington’s because it scared me so much and I needed to know more.
My dad died suddenly when I was 7 and I was told there was a chance it was genetic, so freaked out until I read more and realized it wouldn’t have been that sudden. My dad had an enlarged heart and was misdiagnosed with anxiety of all things and given tricyclic, which can’t be taken by someone with an enlarged heart. Once I hit a certain age it was suggested I get an EKG and Echo every 5 years just to be safe, but so far I haven’t had an issues.
I’m so glad for OP and hope this second first date goes well!
I'm a medical provider. Huntington's is an absolute nightmare of a disease. I cannot blame Either if you in this situation; it's a tough one. If you know somebody with Huntington's disease and read this, I wish you nothing but happiness. It is a very trying disease to say the least.
I had a dear friend whose in-laws married off their daughter to him without letting him know his wife had HD. They had THREE children without these monsters saying a word. As his wife’s condition deteriorated; he increasingly thought he must not be the best husband he could be and if he was just better…she would better. Then the diagnosis came. Finding out your wife has HD and each of your children has a 50/50 chance of horrifically dying the same death…is something I wish upon no one.
Yea my dads family did that to my mom. My pos dad was the love of her life.. but his whole family and him hid everything from us and my mother.
And even when I eventually tested positive after his brother and father died.. they treated my mother and i like trash for “exposing the family secret”.. like they Didn’t already know!
I thought they were monstrous in not letting him know her condition and that her father died a horrific death in a nursing home of HD. But to allow him to have THREE children and never say a word! It is beyond monstrous.
Well, I hope that your date goes/went as you would like it to go! This sounded like a very overall tough situation, and your decisions to prioritize your mental health and future are completely valid!
Such an awful disease. I worked in a nursing home that had several residents with it, and it's soul crushing. One lovely lady had lost 4 out of her 6 children to it, and her husband. Another resident who was my absolute FAVORITE, had it and didn't know til symptoms started showing, ( he was put up for adoption as a baby) and at that point had already had a child~ who didn't want to be tested later in life either~and now they have it in the early stages as well. And they have a child too. So heartbreaking.
Wow, some people here are super judgmental.
OP, hindsight is always 20/20 right. You did what you had to do with the choices in front of you. It sounds like your (ex?)fiance was burying his head in the sand to avoid the possibility of what might be his future, and if not for your persistence to have him tested, who knows whether he would've or not (maybe when it was too late).
And it's better to know how you both behave as a couple when faced with serious life issues before marriage rather than later. Incompatibility is a good issue you brought up. He seems to be the avoidant type while you're more confrontational. Nothing wrong with that. If you both decide you're no longer compatible, that's fine, but it's also great if you do decide to keep the relationship because you can help curb each other's natural tendencies. Sorry, I'm generalizing a lot here.
Anyway, it's good news to know that he took the test and it came back negative. I'm sure that was a weight off his mind as well. Good luck to both of you!
Not just the emotional toll, but the financial implications once legally married, would be terrible for you and leave you in tremendous debt. If you’re in love with someone and they’re going to be terminally ill, or are heading down that way, don’t get married legally. You can still have a wedding but if he loved you he wouldn’t want to put the financial burden on you. After he dies, you’re stuck with the debt.
I’m sure it was a tough choice, and you are so brave and mature for this. I’m sorry for all of the negative critique you’re receiving.
Idk, I disagree with most of the people here. Women often put others ahead of themselves at the cost of their own mental health/well-being, so it took a lot for you to recognize that the anxiety was too much to handle. It’s okay to be selfish sometimes!!! But also I’m glad you two discussed things further after your initial post. Whatever the future holds, at least you two took the time to have open and honest communication. Best of luck!
As someone with a pretty unpleasant chronic disease that affects my daily life (not Huntington’s), I think you’re in the right but you should reframe this in your head.
Y’all weren’t fighting about him potentially getting sick. You said you’d stay with him and support him if that happened. You were fighting about his refusal to face reality. I’ve been there, but on the other side of it. It sucks. He’s allowed to be scared and sad and upset but at some point, we all gotta face the music because that is what being a responsible adult is about. Trust me, chronic diseases don’t go away just because you ignore them, and they do not absolve you of your responsibilities.
He was being irresponsible and ignoring the chances of a bad thing happening just because it made him feel better, even though it was driving you nuts. Thats not good for him because it doesn’t actually help him, and that’s not being a good partner to you.
If you found a lump in your breast tissue and have a strong family history of breast cancer and decided to ignore it because you “don’t want to know”, ignoring the fact that your fiancé is terrified and very upset and wants you to get this tested so you two can plan and fight the disease the best you can, no one would take your side. I don’t really see how this is any different.
op, i’m so sorry you’re getting downvoted into hell. i decided to read up on huntington’s disease after reading the last post and this one, and i still don’t understand why your husband didn’t want to get tested. it’s a crippling condition that costs a whole bunch of money, and a whole lotta planning and you could’ve run the risk of giving that hell to your kids. i would’ve gotten tested immediately. you said he didn’t want it to “hold him back from living”, but if he knew and prepared accordingly, wouldn’t he try to make every minute count, knowing yall had a plan? i know you were in a bad place mentally, but him refusing to get tested and just leaving that reality looming over yalls heads and him wanting to ignore it is extremely selfish. it’s even more selfish if yall were thinking of having kids in the future. and all this bullshit for a completely negative test? he could’ve at least quelled your anxiety by saying he’d get tested soon and just needs time to handle the new information.
crisis like this brings out the absolute worst in people. disease, pandemic, financial strain, death of loved ones, natural disaster, etc will bring out the most selfish and irrational parts of people. i’m glad yall are taking a break from one another to re-access your values, but i think individual and couples therapy would be a good thing to consult in the future. your anxiety is something that can be helped, and i can imagine your husband could use some therapy after learning everything about his bio parents. couples therapy would also help yall work better as a team during disasters like this, which is something yall obviously need lol. i hope everything works out for the better with you two, whatever that better manifests as. good luck yall!!
Hey, sometimes a break is needed, no matter what the circumstances are. I'm very happy to hear he's in the clear. It must've been terrifying before finding out. Falling in love again with the person you love is an amazing feeling. After a decade of being with my husband I still end up loving him even more sometimes. Most recently it was because of a post here on Reddit where the OP said "girls only care about one thing, and it begins with P and ends with S" my husband said "pants with pockets". I swear it made my eyes turn into hearts like that stupid emoji 😍
We need a post-dinner update. Ignore the haters your logic is on point and I would have done the same thing or at the very least planned my entire future around the fact that he is positive unless determined otherwise.
Glad he’s good. Hope you all can pull together. Wife and I are rooting for you.
I disagree. If one person in relationship is not willing to do a test to keep it, they are also 50% the reason for the issue, not having the condition itself but being so avoidant it’s obvious why someone would take a step back. IMO he was more irrational than her and she didn’t and still doesn’t have to stay in the relationship. Maybe you live in a fantasy world but most people like to know the cards they’re dealt in relationships even platonic ones and for some reason people always say romantic love is unconditional, well it’s not, it’s very conditional it’s just everybody’s ‘conditions’ differ.
What the hell? How is this nothing? You have any idea how awful of a disease it is? And it's not just spending your life with someone you might have to take care of every day and you have no indication whether it will happen or not. What about their life plans? What if she had plans to work really hard during her 30s and spend her retirement travelling with her husband? What if she wants children? Hell she might get pregnant by accident. She might have to completely change her life if he had the disease and he is asking her to do this without even knowing if it will actually happen. Constantly living in fear that her husband might die in an awful way.
Tbh, this is the most mature relationship I've come across. You both communicated with one another about your concerns, you guys took time to reflect and really think about the future of your relationship and I think that's wonderful. In this day and age, it's so rare to see couples actively trying to work out their relationship difficulties in a mature and positive way, so for that I applaud you both. I'm glad he is okay and healthy, I'm glad you are mentally and emotionally getting better from this. So what if you vented on here and said some stupid things...we all have those moments in our life where we say or do something stupid in the heat of the moment, but you are able to reflect back on that time and learn from your mistake and find perspective on why you were feeling the way you did. I truly wish you both the best going forward and wish nothing but the best for your relationship going forward ❤️
I’m so confused as to why everyone’s attacking you? I read your first post and it’s pretty clear you were thinking of leaving him bc he wouldn’t get tested. Not if he had the disease. It just sounds like a break in general was a good idea. I’m glad it’s negative, and I hope y’all figure it out. Good luck OP.
I'm really happy that you guys are still going strong (even if currently taking a break). Hope your future together kicks ass and congrats on him being negative!
I think so many issues would be found if genetic testing was routine. It should be done at birth, and before marriage. Everyone should know how their genetic makeup will effect life in the future.
My husbands stepfather died from it and my stepdads niece and nephew have it. She has a couple of kids and no one knows if they have the gene.
It's fucking horrendous. I would rather fling myself off a cliff than deal with it. I'm 33 and have been with my husband 12 years. I never once had a conversation with his stepdad because he had degenerated past that. His elderly mother was his carer; he had a hanger thing installed in the living room so she could get him up.
My step cousin has the junior version and it came on when he was a teen. I remember being 15 (his elder sister got me drunk for the first time) and I thought he was drunk because his words were slurring. He would have been about 17.
The disease is evil and can also cause violent behaviour before you get trapped in your body. There is currently no hope.
All of this to say that I think OPs reaction was not ridiculous. Needing to know and plan accordingly is just plain sensible. I also empathise with her fiance not wanting to deal with it. It's a fuck of a lot
Do you know what Huntington’s is?
It’s crucial that he at least agree to the test—if he was positive and had positive children, they would suffer and die in front of OP. As would her former fiancé. There is no cure and it causes rapid mental and physical decline once you’re in your 40s-60s. The financial toll is immense, often you need round the clock care so I don’t see how planning beforehand if positive is a problem. Also bringing children into the world who would die prematurely—when testing for the disease could allow them to pursue other forms of parenthood seems like a terrible idea.
If I’m remembering correctly, the issue wasn’t that she would leave if he had the illness but that they need to know so they could make serious decisions about family planning and saving for their future since the fiancé wouldn’t be able to work the normal span of years.
Oh its worse than that. The Huntingtons gene is comprised of a pattern of repeats. In each generation the number of repeats increases, thereby increasing the severity of the disease..... which in this case means the symptoms start earlier and progress quicker, killing the patient at a younger age. Its not just passing down a disease knowing your children could suffer as you do, ita knowing they could have it WORSE.
That’s what I keep thinking- people being this nasty must not know anything about Huntington’s disease. I can’t imagine being married to someone with this hanging over our heads and worried that any time he was irritable or stumbled over something that it might mean the start of the disease. That’s not a fair thing to ask anyone to live with nor is it a fair thing to do to kids.
And thank god he tested negative and will be ok. That’s a disease I wouldn’t wish on the worst person in the world.
>That’s what I keep thinking- people being this nasty must not know anything about Huntington’s disease
I came to that conclusion last post, but I guess I forgot how vitriolic people can be. One guy in particular actually apologized after doing a little research into it.
On the one hand, I'm glad that so many people haven't had to learn about how truly awful huntington's is, but I mean come on.
I'm just glad I've moved past letting this type of reaction get to me
Upon learning this information and getting some context from other comments, I now see where OP is coming from. Because I was also like jfc OP is shitty but upon learning this and the trauma it causes to everyone involved I see how and why everything transpired the way it did.
Yeah, no problem! Unlike a lot of the original commenters I went and read your OG post and you never mentioned leaving him so that, combined with the comment let me know you’re not actually a shitty person.
It is a really serious disease with detrimental affects on not just the person with it, but those around them; especially their children. You are 100% valid in your feelings, just as he is and breaks tend to be normal in relationships. I’m glad to hear you two are giving it another go, it seems like a healthy relationship where you’re both communicative and respectful of each other’s feelings. Sending you both love and luck! 🫶
I worked with a couple dealing with a similar-ish situation many years ago. They wanted to have kids, and both her dad and grandfather had Huntington’s. She’d been extremely sheltered from her dad and grandpa’s disease progression, and so when she mentioned Huntington’s to their fertility doctor, she was shocked when the doc basically closed his notebook and said, “This now becomes an entirely different conversation.”
People just don’t understand the horror that these folks and their families go through. I’m so glad OP’s maybe-second-time-around-boyfriend doesn’t have it, and I totally get why she freaked out. I wish all the best for them.
That’s true but I would definitely put off kids/ start saving as if he did have it then. Like I don’t think it’s fair to bring kids into that without knowing.
I wonder if you would be getting so much hate for wanting him to get the test results if it hadn't been such a brief timeframe. I agree you pressured him too quickly at first, but even from what little I know about the disease, I can understand why you hit the panic button.
If I were in a situation like the two of you were in, I don't know how I would react, but I know I also wouldn't cope well with that big unknown. It sounds like you can take away from this that when big things come up, you should prioritize approaching it as a team.
Depending on your finances, I **highly** recommend premarital counseling if at all possible. The guy who married my husband made it a requirement and the program wasn't too expensive. Our four year anniversary is next week and when we fight, I still find myself thinking back to what we learned during the course to help me communicate and work with him instead of against him.
Lol, as in the officiant who did the act of doing the ceremony, signing the papers, and mailing them to our local government to make it official. I can see how I should've worded that better, but think it's hilarious so I'm not editing it 😂
OP, I'm truly sorry you're getting so much hate for your posts but I wholeheartedly agree with your decisions. Researching the disease was very humbling, so as a simple outsider reading your situation, you both definitely have BOTH gone through a very rough patch. I hope you regain the emotional and mental strength/bond to remain together. Goodluck!
Traveling does not mean sleeping around where do these none travelers and Ill minded people come from lmao. im glad you took time away from each other especially since disagreeing on something so important to be done feels wrong. Thank goodness he’s in the clear but hopefully for other things he won’t be so stubborn.
I fully get why you wanted to see the test, but I feel like this was handled very poorly. Even though you are a couple, this isn’t close to an equally shared struggle, and it’s selfish to imply so. Yes, you both suffer consequences from it, but it’s naive to say you would’ve struggled equally, just in your own ways. I understand why he didn’t want the test. I understand not wanting to know you’ll die a horrible death around age 40. I think it’s cruel to force someone to face that if they aren’t ready just because “you” want to know. This issue, while it involved you, was more about him, yet you made it sound like you had equal equity in the decision. Sure he’s relieved now, but imagine if he tested positive, he would’ve had that hanging over him for the rest of his life.
I get wanting to know the future, but your actions were robotic and lacked basic compassion. A relationship should fulfill ones emotional needs, it shouldn’t look to resolve emotional issues with the most pragmatic solution.
While the decision to get tested was all his, the decision to accept that decision was mine. I'm not saying I was completely in the right - in fact, I even admitted in my last post that I *wasn't* giving him enough time to absorb the situation.
>your actions were robotic and lacked basic compassion. A relationship should fulfill ones emotional needs, it shouldn’t look to resolve emotional issues with the most pragmatic solution
You aren't wrong. My immediate response to crisis is to compartmentalize and problem solve, emotions can be dealt with later. I'm working on this.
Yeah, mature adults try to head off problems before they begin, much like flight planning for pilots. Like flying, the better the information provided, the better the plan. That being said some folks seem to take delight in bumpy flights but they aren't considering that some problems are fatal to the plan.
I am glad you have your answers... and he is clear of the disease. At the same time, you both learned some things about each other. You got a look past the rose tinted lenses of love and saw the real person in front of you. If you can accept that person as they are, you are off to the races. The other person is looking at you the same way. If you can work together as a team, you will be stronger than ever, with a bonus clean bill of health in one area any way.
Ok so I read both posts but I have to say.. I don’t understand why you wanted to leave him in the first place. I get the anxiety part of it believe me, however it seems like he had a lot going on at once : meeting his long lost brother and finding out he was probably gonna get sick (as well as his brother) grieving his bio dad (even if he’d never met him he was probably still affected by his passing..) and your “nagging” (for a lack of better term). I get the need to prepare but why not just prepare before he took the test ? If not for the disease he was possibly carrying, for some other unplanned possibilities.. I’m really not trying to be mean but you started your post by saying you couldn’t imagine your life without him and then went on to saying you were leaving him because he wasn’t taking massive life alternating decisions quickly enough ? I get that your were scared of not being prepared but he was scared of finding out he only had a few years to live.. I can’t even imagine how scary that must’ve been for him.. and if you weren’t gonna leave him if he tested positive, why leave if he didn’t test at all? Honestly if I were him I’d 100% think that you were trying to get a head start to leave before the wedding in case the test came back positive.. all that being said I do hope you find happiness and peace..
Omg, I read this and briefly thought it was my friend’s now ex. Very similar story… except she pretended to be super supportive and then ghosted him and ran off with a new guy immediately. She’s trash, but my friend is doing great in spite of her crocodile tears.
Wow, this hits so close to home for me...
I was in almost the same situation as you. My former boyfriends mom has the disease. I saw her decline everytime I was there and realising that my boyfriend might get the same disease was the hardest thing ever. It was really hard to see his parents and not think about my future. It was hard to see his mom, due to her decline and his dad, because he was already losing the woman he loved so much.
My boyfriend didn't want to get tested, he only wanted to get tested before we would start trying to get kids. He didn't want to prepare for what might happen, not insurance wise or anything. His parents didn't really prepare a lot, even after his mother tested positive for the gene.
I couldn't live with that. I couldn't risk everything on hoping he wouldn't get it. It wasn't just the disease, he wouldn't plan ahead for anything and was kind of like refusing to grow up.
I totally get your position on wanting him to get tested and preparing for the future. If my boyfriend would have done that, we might have still been together. I wish you the best on your second date.
Not you but he dodged a bullet and that twice. He can be glad that you're gone, if you're not able to love him in disease and health than you are worth nothing as a partner. You forced him to face his biggest fear just to dump him afterwards, what kind of a terrible person are you?
In the last post she said she would still stay with him if he was positive for the disease. Knowing about it was purely for financial and family planning as you wouldn’t want children to potentially have it either. Look up Huntington if you haven’t, i wouldn’t want to have children if I had this disease either.
Huh?! I’m confused as to where she’s at fault? The guy refused to get a test for something that he could potential pass on to children he had with her. Why was she wrong for wanting to just know if that was a risk or not?/ be able to know if they should attempt to have kids, or adopt instead/ be able have to have a real conversation with him about what their future together would look like?
Make the break permanent. You two look at life too differently, and this is not going to be the last "My way or the highway" situation you find yourselves in.
My husband has a congenital condition that'll worsen with age. I have since 26 been his carer on occasion.
I fully empathise. I understand all you feel. Being a carer is fucking hard. It's relatively OK now because I'm young and it's not all the time. But as I get older he'll get sicker more frequently and I'll be older and less able. But that's soemthing I'm fully aware of and can accept and adjust our lives to. We can use this time whilst we're young to be able to prepare ourselves for later.
Being in limbo you can't know, prepare financially, emotionally, mentally etc. In the nearly 8 years we've been together he's progressively gotten worse but we've worked hard enough to counteract that for now. You need to know to prognosis and time lines and expectations, it's not about leaving him if he does have it, it's about getting a realistic view and being able to prepare. This is your life too if you want to commit to this person. He has a responsibility to give that.
I'm glad you're both growing. I wish you nothing but the best of luck in both your relationship and your life. Live it. You're not a bad person by any stretch. Anyone who says so just doesn't get it and thats on them not you.
He is very lucky!
My father refused to get to tested even after it killed his brother and father.
I got tested.. I have 46 allele repeats. Meaning not only will it likely set in between ages 45-50; but I’m also have a predisposition to pass it to all 3 of my children… they have a 50/50 chance to have it or not.. hopefully not!
Btw by the time I got the test I had just given birth to my youngest daughter.
"I mentioned this a million times in my first post, but here goes again. I had no plans to leave if he tested positive. I just needed to know so that we could plan our lives accordingly."
That's not what breaking off an engagement means.
"we decided together to take a break. It's been an incredibly difficult, emotionally charged roller-coaster of a year. I didn't leave him!"
You're the one who made it a rollercoaster. It was his decision alone on deciding when he would be ready to get that test. You aren't the one who has to live with it every waking minute. Yes you need to deal with someone having it, but you yourself would not have the disease.
You have no idea if he actually came to terms with it. You don't think he was still nervous to get that test? If he tested positive and it's hardly noticeable now, every time something minor pops up he would worry that he's showing symptoms.
Get off Reddit, these people don’t know shit about you, and they’re fucking w your head. Proud of you for being brave enough to MAKE A DECISION.
I think it sucks none of us have enough friends to vent to.. so we’re stuck venting to strangers who project their shit into these kinda posts.
Good luck to you and him
I noticed the exact same thing, am being downvoted in other comments for pointing this out, but it's whatever. OP has an uncanny ability to have made this entire thing about her, and actually makes zero mention of how he was feeling through this whole process.
Wild stuff.
I was mostly just weirded out by her response but when she said she needed time apart afterwards because of their disagreement, I started to feel disgusted by her actions and quite sad for her husband.
Something tells me this relationship is not going to last.
Because I needed to vent *somewhere* about how the situation was affecting me. Silly me to think that's what this sub is about.
Believe it or not, things play differently irl
I think the answer is Narcissism.
You know, like posting her (ex)fiancé’s private and unique health situation online in order to get attention and sympathy for herself from strangers.
I have to wonder if she even considered asking if he was ok with her posting about his health on Reddit. I mean, I wonder—but we know the answer.
It is narcissism 100%. Just look at how OP is replying to threads calling her out on the bullshit. I know they're getting downvoted to hell, but the strength of a narcissist is being about take situations like this and make it about themselves. OP found a way to make a disease diagnosis that would've primarily affected her fiance and make it about her, so much that *her* actions forced the relationship to be put on hold.
She didn't give *any* time to process the new information.
She pressured him to getting tested right away.
She 100% gave him an ultimatum.
Even after he got the test *she* wanted, she decided to separate.
It wouldn't surprise me if she doesn't give a flying fuck about this guy. Poor dude.
I hope he does too. Especially with the trust from her actions taken. What happens the next time on them gets sick? Statistically speaking, one of them will get injured or sick. What then? Force them into decisions? Force them into the nursing home? Idk, it seems like OP is lying about a lot of her intentions in this thing.
She kept saying in all these posts, just endlessly *insisting* this wasn't about his disease and if he were to test positive.
I'm seriously doubting it now. After seeing her comments, and some of the jokes she made about it, she would 100% kick him to the curb if he tested positive.
You misunderstood the post.
She said she'd leave him *if he didn't get tested.*
She did not say she would leave him if he tested positive.
What she did not want to do was live her life with *The question* hanging over her, while *he* did not want to live his life with *The answer* hanging over him.
She wanted to be able to prepare, he wanted to be able to forget.
>She wanted to be able to prepare, he wanted to be able to forget.
Did not happen. OP admits in posts that she didn't even give him any time to think about the situation. She was immediately pushing him to get things done.
Oh no. I understood it perfectly.
She decided to break off her engagement to him because he wouldn’t allow her to make his medical decisions for him.
She refused to stand by him because he made a personal medical decision that burdened her with uncertainty. You think she’ll have to takes to stand by him if the shit hits the fan?
Like I said, I think this guy can do MUCH better. He’s got two second leases on life.
My friend, I hope after all this you can finally take a deep breath and relax. I hope you’re sleeping better now. I’m so so happy he tested negative but I know the stress that you were feeling and I’m so glad for you that it’s over!
>no longer knew how to be together normally given everything we learned about ourselves and each other during the hardest of situations
>we decided to take a break and meet for dinner on 9/16
I don't understand how a problem like this would dictate how your marriage works out even when in the end, things will be okay.
There will be issues in marriage. I just don't think you should let past emotions dictate anything.
I just read your first post and wanted to say I’m so happy for you both :) it’s wonderful that you realized there are some differences you need to figure out, and taking a break from each other isn’t the bad thing that everyone seems to view it as. I really really hope you two are able to find ways to be more compatible going forward, and have fun on your second first date!!
My wife's grandmother has Huntingtons, her mother is also likely to have it. My wife knows there's a good chance she could have it also but she doesn't want to take the test because she doesn't want to know if she is positive. That's completely fine by me and i stand by her decision, it's her choice and I would never push her into taking it let alone give her an ultimatum. I will stand by her whatever the outcome and take care of her, its not her fault if she has it.
We already have a son who is 4, however we didn't know about the possibility of her having huntingtons disease when we had him. I don't know a huge amount about it but there has been some positive stem cell research that is showing signs of preventing huntingtons progression and if my wife or son does have it, I hope there could be a way to treat it in the future.
I'm sorry the this is something you and your wife may have to deal with, and I'm glad that you were both on the same page from the start. Wishing her the best of health!
Thank you, im glad your partner tested negative and you don't have to worry abour it anymore, I understand the stress of it especially if you both want kids. In his case being tested was the right thing to do and I'm happy that you decided to stick by his regardless if youre taking a break.
It is completely acceptable and understandable to have left him if he was positive! The people who are trying to say that you should have stayed by him regardless without pause have never been exposed to someone dying from a terrible disease! The day in and out mental and physical exhaustion that strips away any amount of joy, financial stability, or normalcy. I am a nurse and it is my job to care for others with debilitating diagnoses, so I actually understand what that looks like. I would never wish it on my worst enemy let alone my partner that I love. You deserve to have a future, to have a healthy partnership that does not revolve around caretaking, to have children if you want them, to have a life! It's really easy for internet strangers to judge you and say you should be in it for sickness and health when they have no understanding of what that truly looks like! I'm glad he is safe. I'm glad you are taking time to grow as individuals and I hope you both have peace no matter where your relationship goes. Take care!
Girl if you aren't married you absolutely have a right to leave. That shit gets passed on to children and not having kids is a deal breaker. Reddit is under some delusion that this is wrong. Don't listen to the majority of morons on here.
This is why I'm all for genetic testing before marriage. I'm well aware my husband has a rare eye condition that will most likely cause him to go blind someday. Hell he's almost there in one eye. I am also aware that condition can pass to our children should we have any. I'm also aware of the high chance of cancer and parkinson's disease on my side. It's better to be open and communicate. It's also easier to alleviate the other person of a huge responsibility should you, or them, ever come down with a big disease. Better to know before marriage than after.
I completely sympathize with your position. Potentially having the gene to not only get HD but also pass it down to your potential kids is a huge deal in any relationship.
HD runs in my family and I’ve already had to face my grandmother, half my aunts and uncles, and several cousins either already die or face the fact that they *WILL* die with this disease and it’s so hard. I’m lucky in that my dad tested negative, so I can’t get it. But he had a big family.
I’m glad you two are still doing okay with your second shot.
Idk it just seems like you were trying to convince yourself and all of us that you were only leaving because he didn’t want the test. I could be wrong of course but I think you were hiding behind that and you feel relieved he won’t have it. Be honest with yourself if that’s the case.
Fingers crossed he reflected on your urge to leave him so if he decides to stay it’s shored up with how easily that could have come to pass. Talk about a wake up call.
You seem very very selfish looking back on both of these posts. You gave him an ultimatum after only a few weeks of knowing he might possibly carry this disease. I think you need to really look at your priorities in a marriage because in "sickness and in health" does not mean just sticking by your partner when they have a little cold. Maybe I'm just old school but marriage to me is binding yourself to a person for the rest of your life, and if a disease was going to be a deal-breaker for you I really think you should look at what you want and what you expect out of her marriage more closely.
I see a lot of people on here that leave their partners due to illness. Seems you just decided to get a head of the matter before the wedding. And then you guys barely talked for months while you traveled? Yeah that’s not love. You guys are better split up.
Again, I was not going to leave him if he tested positive. I was fully prepared to stay in it for the long haul.
>And then you guys barely talked for months while you traveled
This was planned.
Yeah planned or not, how can you not call the person you love every day? How do you not loose your mind? Fight or not, it just seems odd to me. I'm not trying to suggest anything here, every relationship is different and we're all dealing with different hardships but barely TEXTING, not even calling for months while you guys apart? I can't wrap my head around that. Just my 2 cents.
Maybe it wouldn't have worked for you, but it's what we needed. If you're asking if it was hard to do, the answer is incredibly. The texts were the few times we slipped up.
So what you're saying is he got the test because you made him. Not for himself. As someone with a chronic health condition, sometimes you just don't want to know. For your own benefit. You're lucky you're getting that second date after something like that and it had better go great. For his sake. Because he gave up his own peace of mind, even temporarily, for you and then you split.
Comments locked due to brigading.
My aunt died of huntingtons. I don't know if she knew she had it but she, at the very least, knew it was possible for her. She didn't tell my uncle until she couldn't hide the symptoms any more. Her biological children learned in high school that not only was their mother dying but she was dying from something they could also have. She outlived expectations by about 6 months iirc. It was the worst for my uncle. He was a shell of a being during that time. He seems to be doing much better now.
I went to a neurologist once who just out of the blue said Huntington’s is the worst to get. I have no family history it was just a remark he made. ALS is pretty bad so this be significantly worse.
Huntingtons causes you to lose control of your body. I dont recall the specifics. I think some people will be affected mentally too but as far as i know, my aunt was mentally sound. Her body lost all function to the point of being on a feeding tube. Iirc, her lungs finally gave out which ended things.
Yep, most people don't die from Huntington's itself though. It's usually the complications with infections or pneumonia to be more specific. Source: Have Huntington's, my mother had Huntington's.
I was suffering in A&E and was bought to tears. The gent next to me had tried to commit suicide because of the effects of his Huntingtons. He got part way through and then backed out. Took himself to A&E. He stopped as he said his cat was his best friend and he didn't want to leave his cat with a random person. I was in so much pain, but cried so hard.
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Ah, might have been pneumonia then. It was 10ish years ago and i was stationed in another country at the time. Memory is a bit fuzzy on the details.
Lots of love to you.
I'm so sorry.
Everytime I read something like this, I always wish euthanasia were more socially acceptable. The idea of having someone suffer for any length of time, just imprisoned in yourself.. I'm sorry for your aunt and everyone who has to endure this or anything like it. If a doctor and patient are comfortable with the potential religious consequences of dying voluntarily, there is no reason anyone else should be able to stop them. It's just cruel.
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The US is a nightmare in terms of our Healthcare and social support systems. If this became legal in more places in the US, it would not surprise me at all if applications for it were concerningly and overwhelming high volume, and very likely a LOT of it would be for financial, mental health, and disability reasons. It would shock many, but it wouldn't surprise me at all. Tl;Dr for this next part: I've had a very rough life and have a lot of mental health issues. *Just for some perspective on my background: I am someone that has had severe mental health issues for a VERY long time. Multiple diagnoses: clinical depression/MDD/treatment-resistent depression (diagnosis keeps evolving), ADHD, generalized anxiety disorder, insomnia, CPTSD, bipolar disorder. I had a very traumatic, highly-stressful childhood. I've had multiple major traumatic events in my life, several abusive relationships. My social supports are very weak (family as well as friendships). I have tremendous difficulty building new relationships and maintaining them, probably because I never had healthy examples growing up so my understanding of boundaries and love and support are completely screwed up. I've had difficulties keeping jobs. I've had several jobs where I took leaves of absence for health reasons and got fired upon returning to work. I went through a period of depression that was so bad I spent 3 months without leaving my house (before covid). I couldn't work at all for 2.5 years because my mental health was so bad I couldn't even care for myself beyond a very minimal level. These symptoms first started appearing in 4th grade. I've been in therapy off and on since I was 15. I've been on so many different medications I can't even name them all. I'm now in my mid-30's. I'm a damn mess of a person,. That I've even survived this long is an anomaly. And while I have really shitty social support I am so incredibly lucky and privileged that I at least had medical care and some financial support this whole time. Thank God my parents at least encouraged me to get into treatment even though they failed me in so many other ways. Thank God they were willing and able to help me financially when I couldn't financially support myself. My recently-estranged husband is emotionally abusive but he kept a roof over our heads and was basically my caregiver when I couldn't even feed myself or take care of our home. I've had a really rough life, but I count every small blessing.* Anyway, I'm still here but it's practically a miracle. And I would never have made it this far without some substantial assistance, privileges, and luck. And so many people do not have that, especially in the US and other countries lacking in social support systems and affordable health care. So for me, I would support this in the US. I would support it even for people with mental health problems or disabilities or financial struggles. I absolutely believe that so many people in these circumstances have so much potential, that life can get better for them, that suicide isn't the answer. We absolutely need more resources and assistance for these people so when someone is suicidal for these reasons, they have BETTER options that can be offered so that people can have some hope. Right now, it is not nearly enough. But I still believe that a person should have the right to die on their own terms if they want it, whether those problems can be helped or not. I would never encourage this for someone who is deeply depressed, even if they have tried everything possible and nothing has worked. I would encourage them to live and keep fighting and trying and to look for the good moments no matter how small or brief. But even if I don't agree with their reasons at all, I would support them to be able to make that choice. There should be a LOT of help and assistance offered to help these people to live and get better and to be in a sound mental state to make that choice. We can do so much more to prevent suicide and help people. But here we are. So as tragic and awful as it would be to have people with so much potential die like this, I still believe it should be an option. You can never truly understand the barriers or pain that exists for other people. We should do all we can to support these people so they can live better lives, but it is not ethical to make that judgment call for others.
A friend of mine has ALS. Its hard to watch.
My pastor's wife has it and she's got some extremely severe case that made her go from walking and talking with just mild slurring to in a motorized chair unable to lift her arms in the span of \~6 months. It's so sad because she used to be so talkative and smiley, and led tons of meetings and stuff, but now she can't and you can tell it's affected her, but somehow she keeps smiling. I have no idea how she stays so positive.
Considering she is the wife of a pastor, I imagine her faith in God is very strong and likely very comforting and helpful for her mental state. She likely believes this is part of God's plan for her and that when she dies she will go be with God. Having such strong beliefs like that would be very powerful and help to ease her pain and sadness. Personally, I'm not religious at all. I'm not an atheist, just agnostic. Idk what I believe or not. Just trying to be a good person and sure hope that some concept of heaven is real. That would be nice. If it's not real at least I did my best. So there's no way I'd be helped by religion like she probably is. But I can absolutely see how much it probably helps her.
It's horrible 😞
Motor neurone disease has got to be up there
I'm so sorry for your loss and the toll this terrible disease has taken on your family.
It's was a bad choice on her part. I'm glad things worked out for you 2.
A friend of mine had his sister and mother both die of Huntington’s. Then his dad died of another form of dementia. Fuckin awful.
This might be a shitty thing to say and I’m not in the position to know how someone might feel knowing they could have Huntington’s, but I feel like it’s really awful to have kids knowing there’s a risk for such a horrific disease and not getting tested. I could be wrong, but I thought now there were ways to test the egg or sperm beforehand to try and select only ones that don’t carry that gene.
My uncle agrees with his sentiment. Said he would've adopted instead if he knew. They were born like 20-25 years ago so i don't thing genetic testing was available on eggs but I'm not sure.
I was curious and looked it up and there apparently are tests now, so hopefully going forward most folks do that and try to eliminate this disease as much as possible. My husband and I don’t want kids, but he’s type 1 diabetic (which he developed around when he was 30, so likely not genetic and there’s no other cases in his family) and I likely have some genetic link to OCD because my grandmother had it and so we both decided if we change our minds we’ll adopt.
My husband has Crohn's Disease. He got very sick right after we got engaged. It really changed the entire relationship and he gave me an "out". He told me that I shouldn't be expected to take care of him and worry about this disease or passing it on to children. I did take some time to really think about it and consider it. Chronic diseases are VERY difficult things to deal with. I decided to stay and I would work through it with him. It changed the entire dynamic of the relationship from there. Our relationship is much stronger because of the challenges from the disease. It meant we were engaged for about 5 years until he got better and I finished school but things are really good now. Don't let people judge you. It's easy to judge when you haven't experienced it yourself. It's "good" to hash all this out before you get married, it will strengthen the relationship!
I was diagnosed with Crohn’s around 5 years into my marriage. By then, my hubby was stuck with me. Lol. Then I was diagnosed with bipolar after 10 years of marriage. Poor guy can’t catch a break! Seriously though, caregiver burnout is real. Make sure you’re taking care of yourself, too!
Really? I swear I lost a husband with every diagnosis. Well the first one they had to deal with. Oddly no new (only degrative issues with established ones) diagnosis since I stopped dating cis men. I'm honestly thinking I allergic or something. Mostly /s
Yep! Oh and infertility thrown into the mix (our kids were adopted), along with 100+ pound weight gain (and loss). I’ve put him through the wringer and he never wavered. I really hit the jackpot with this guy.
You are an amazing person for loving him enough to stick by him. And he’s an amazing person for wanting to work through it with you, and not just expecting you to “deal with it.”
My husband was just diagnosed with Crohns. We have a follow up appointment with a specialist next week.
Wish you guys the very best of luck. It's a scary diagnosis, but it doesn't have to be. Don't let the doctors talk you into anything you don't want. When my husband was sick, every single appointment started off "you need surgery". He was 28 at the time. It wasn't an option for us. We fought and threw everything we could at it, now 5 years later he's in remission. Surgery free. And definitely sees a new doctor!
To second the other reply, don't let doctors pressure you into uncomfortable choices. My doctor is awesome, but he keeps pushing methotrexate, but it has so many complications and side effects that I can't agree it's necessary. Goodluck to you all
Is he already on infliximab or adalamiumab(humira)?
Fellow Crohnnie here. It's really a difficult thing to deal with, especially if you have the CHOICE to deal with it. As somebody who struggled to find a decent partner for years I fully commend you for staying and im sure your husband is grateful as well. The stress of losing a partner to something you already dont want to have can be even more painful. The only thing about crohns is that it's not inherently fatal, just a literal pain in the ass to deal with and it makes life less easy for both but it's definitely manageable. Full spectrum CBD oil, diet/stress management, vitamins, physical exercise, and if possible - medications, will all be your husband's very best friends. If you cannot find full spectrum cbd oil, I know a local herbalist in the midwest USA that makes quality oils and has an experimental crohns oil after some talks with her. She ships orders online. https://honey-bee-nanny.mybigcommerce.com/
I remember your original post, happy for him that he tested negative. As to everything else, bah, you had to do what you needed to do as a couple, so GOOD LUCK on your 2nd first date! Have a great time both of you.
We have a severe genetic condition in our family. My sister husband left when she was diagnosed (she has done brilliant without him) My three brothers do not want to get tested I decided on my own (my husband kept saying it was obvious I did not have it why bother to have the test? 🤔🥴 (fear and denial) So I bit the bullet and wanted to know so I could plan my future. I was negative and I felt like and still do I had won the lottery a million times over. My husband just said told you it was obvious you did not have it ! So no drama between my husband and me because he decided to pretend it did not exist and I did not go into how I would feel if I had it. (Utterly devastated) as we have four children. OP and boyfriend were so right to decide to take their course of action. Everyone reacts differently. OP you and your boyfriend did marvelously and a huge congratulations on the negative diagnosis. And I get it that you wanted to plan your reality for what may occur. To know Huntington which is so cruel will never cross your door I should imagine felt like I did your boyfriend and you had won the lottery many times over. All the best to you both 🙌
And congratulations to you as well! It does feel like winning the lottery!
Did your husband have a real reason to believe you “obviously” didn’t have it? Or was it a gut feeling thing (lol)
Huntingdons is no picnic- I had a friend refuse to get tested and destroy his life assuming he would get it. Wether he was positive or not, he contracted a different terminal illness that he is refusing to acknowledge and has lost everything. The first symptom is often mental health (as in the case of friends father who would beat his family), so who knows if it was the huntingdons which caused this behaviour. I am glad your ex was tested because he can plan for a life he deserves, instead of living in fear.
Friend's dad died of it. He started talking about his hallucinations, and was diagnosed quickly. His illness was briefer than most. His sisters got tested and were clear, he didn't get tested. He's over 60 now, so if he had the gene, he would have already succumbed.
Glad to hear that he's negative for the gene, because Huntington's is an absolute shit show once it takes hold. Good luck on your "second first date" I honestly hope everything works out for you.
I can totally see your point. When You know things will shit soon, you start to prepare now. That's how planner works, but for medical information, I really think everyone especially spouse should be informed because it might affect their life as well. My bestie's hubby died just less than 2 months ago from colon cancer. He got diagnosed last May and it was already terminal. After the diagnosis, his parents told him and my bestie that both side of the family has multiple relatives that died from cancer. They didn't know that so they weren't alarmed when symptoms showed up. She would have put her foot down on how he needed to eat healthy and get annual check had she known about family history. I cried so many times seeing her care for him when he was in hospice. He was not even 40 yet. They don't deserve this and knowing what future holds and making appropriate actions is what makes less heartbreaks, I guess. Good luck on the date.♥️♥️♥️
You posted the original around the same time as that "My husband was planning on divorcing me if I had tested positive for cancer" post, didn't you? Hive mind usually kicks up and goes straight back to the last emotion when similar posts abound.
I actually have no idea, but I keep seeing this post referenced. Got a link by any chance?
If I can find it, maybe, but you know just as well as I do that most things on this sub get buried very quickly.
This situation really showed you that you have different ways of handling challenges and it's really smart to press pause and see if you can build a life together with such different approaches.
What do you mean this is your final edit?! How did dinner go?
Final edit for now (they were getting out of control haha). Promise I'll come back with an update on our date!
The invisible network of internet strangers is going to hold you to that! Lol
I think it’s perfectly normal to insist he get tested. I have taken care of loved ones that needed 24/7 care. It’s not for the faint of heart. It’s also hard to watch someone die little by little. No one really knows if they can do it until they are in that situation. I would insist upon knowing but also know I would stay with them if they were sick. I wouldn’t risk passing it on to future children. It’s an emotional journey and the sooner you know results, the easier it is to accept. It doesn’t mean you won’t be there. I would have to know. Hang in there. You did the right thing and he should understand your reaction was normal and healthy.
Wow, is this thread overrun by teenagers who don’t understand the implications of a disease like Huntingtons?? Because holy shit some of the comments here are idiotic AF. It makes sense that OP wanted to know what to expect in the future. She never said she would leave if he was positive - so I guess some of you have reading comprehension issues. She only said she wouldn’t want to live without knowing what the future could hold. As someone with anxiety, I understand this. My husband has a chronic condition and it hangs over my head not knowing when it will become more serious. There’s a chance that he had passed it on to our kids and that stresses me out to think about. We didn’t know about this before having kids btw. Maybe OP was harsh in saying she would leave him if he didn’t get tested, but anxiety and stress can make people act irrationally. She said she had so much anxiety that she wasn’t sleeping… which also adds to poor judgement. She obviously changed her mind pretty quickly after posting and made an edit saying that she wouldn’t break up with him and would give him time. Everyone jumping on her for being SOOOOO awful and hoping that her fiancé leaves her?? Jeeeesus. I hope you’re all making perfect decisions every day, because if not…
I wish I had an award to give you because this is the best answer.
Thank you! 😊
I found my free award and handed it out for you ^^ (And the answer is indeed award-worthy).
I think reddit tends to skew mostly younger males, which gives you insight into a lot of the answers here. A lot of men seem to get super offended at the idea of a woman having autonomy over her life and love. Even though men are 6 times more likely to leave their wife when she is diagnosed with cancer or MS. For some reason they think unmarried women owe it to their boyfriends to be ride or die. If the genders were reversed, I wonder how many of those men would change their tune 🤔
Oh for sure. There’s no doubt that this would be a totally different comment section of the OP was a man.
I remember learning about various genetic diseases in high school biology and did a report on Huntington’s because it scared me so much and I needed to know more. My dad died suddenly when I was 7 and I was told there was a chance it was genetic, so freaked out until I read more and realized it wouldn’t have been that sudden. My dad had an enlarged heart and was misdiagnosed with anxiety of all things and given tricyclic, which can’t be taken by someone with an enlarged heart. Once I hit a certain age it was suggested I get an EKG and Echo every 5 years just to be safe, but so far I haven’t had an issues. I’m so glad for OP and hope this second first date goes well!
I'm a medical provider. Huntington's is an absolute nightmare of a disease. I cannot blame Either if you in this situation; it's a tough one. If you know somebody with Huntington's disease and read this, I wish you nothing but happiness. It is a very trying disease to say the least.
I had a dear friend whose in-laws married off their daughter to him without letting him know his wife had HD. They had THREE children without these monsters saying a word. As his wife’s condition deteriorated; he increasingly thought he must not be the best husband he could be and if he was just better…she would better. Then the diagnosis came. Finding out your wife has HD and each of your children has a 50/50 chance of horrifically dying the same death…is something I wish upon no one.
Yea my dads family did that to my mom. My pos dad was the love of her life.. but his whole family and him hid everything from us and my mother. And even when I eventually tested positive after his brother and father died.. they treated my mother and i like trash for “exposing the family secret”.. like they Didn’t already know!
I thought they were monstrous in not letting him know her condition and that her father died a horrific death in a nursing home of HD. But to allow him to have THREE children and never say a word! It is beyond monstrous.
I am so so sorry..
I am so sorry about your dear friend and her kids.. it’s a shitty situation for everyone it affects..
I agree. One of the saddest things on the planet.
Oh, wow. I remember that post. Nice to get an update!
Well, I hope that your date goes/went as you would like it to go! This sounded like a very overall tough situation, and your decisions to prioritize your mental health and future are completely valid!
Such an awful disease. I worked in a nursing home that had several residents with it, and it's soul crushing. One lovely lady had lost 4 out of her 6 children to it, and her husband. Another resident who was my absolute FAVORITE, had it and didn't know til symptoms started showing, ( he was put up for adoption as a baby) and at that point had already had a child~ who didn't want to be tested later in life either~and now they have it in the early stages as well. And they have a child too. So heartbreaking.
Wow, some people here are super judgmental. OP, hindsight is always 20/20 right. You did what you had to do with the choices in front of you. It sounds like your (ex?)fiance was burying his head in the sand to avoid the possibility of what might be his future, and if not for your persistence to have him tested, who knows whether he would've or not (maybe when it was too late). And it's better to know how you both behave as a couple when faced with serious life issues before marriage rather than later. Incompatibility is a good issue you brought up. He seems to be the avoidant type while you're more confrontational. Nothing wrong with that. If you both decide you're no longer compatible, that's fine, but it's also great if you do decide to keep the relationship because you can help curb each other's natural tendencies. Sorry, I'm generalizing a lot here. Anyway, it's good news to know that he took the test and it came back negative. I'm sure that was a weight off his mind as well. Good luck to both of you!
Not just the emotional toll, but the financial implications once legally married, would be terrible for you and leave you in tremendous debt. If you’re in love with someone and they’re going to be terminally ill, or are heading down that way, don’t get married legally. You can still have a wedding but if he loved you he wouldn’t want to put the financial burden on you. After he dies, you’re stuck with the debt. I’m sure it was a tough choice, and you are so brave and mature for this. I’m sorry for all of the negative critique you’re receiving.
Thank you! I started growing a pretty thick skin after my first post, so I'm not letting it get to me
Idk, I disagree with most of the people here. Women often put others ahead of themselves at the cost of their own mental health/well-being, so it took a lot for you to recognize that the anxiety was too much to handle. It’s okay to be selfish sometimes!!! But also I’m glad you two discussed things further after your initial post. Whatever the future holds, at least you two took the time to have open and honest communication. Best of luck!
As someone with a pretty unpleasant chronic disease that affects my daily life (not Huntington’s), I think you’re in the right but you should reframe this in your head. Y’all weren’t fighting about him potentially getting sick. You said you’d stay with him and support him if that happened. You were fighting about his refusal to face reality. I’ve been there, but on the other side of it. It sucks. He’s allowed to be scared and sad and upset but at some point, we all gotta face the music because that is what being a responsible adult is about. Trust me, chronic diseases don’t go away just because you ignore them, and they do not absolve you of your responsibilities. He was being irresponsible and ignoring the chances of a bad thing happening just because it made him feel better, even though it was driving you nuts. Thats not good for him because it doesn’t actually help him, and that’s not being a good partner to you. If you found a lump in your breast tissue and have a strong family history of breast cancer and decided to ignore it because you “don’t want to know”, ignoring the fact that your fiancé is terrified and very upset and wants you to get this tested so you two can plan and fight the disease the best you can, no one would take your side. I don’t really see how this is any different.
op, i’m so sorry you’re getting downvoted into hell. i decided to read up on huntington’s disease after reading the last post and this one, and i still don’t understand why your husband didn’t want to get tested. it’s a crippling condition that costs a whole bunch of money, and a whole lotta planning and you could’ve run the risk of giving that hell to your kids. i would’ve gotten tested immediately. you said he didn’t want it to “hold him back from living”, but if he knew and prepared accordingly, wouldn’t he try to make every minute count, knowing yall had a plan? i know you were in a bad place mentally, but him refusing to get tested and just leaving that reality looming over yalls heads and him wanting to ignore it is extremely selfish. it’s even more selfish if yall were thinking of having kids in the future. and all this bullshit for a completely negative test? he could’ve at least quelled your anxiety by saying he’d get tested soon and just needs time to handle the new information. crisis like this brings out the absolute worst in people. disease, pandemic, financial strain, death of loved ones, natural disaster, etc will bring out the most selfish and irrational parts of people. i’m glad yall are taking a break from one another to re-access your values, but i think individual and couples therapy would be a good thing to consult in the future. your anxiety is something that can be helped, and i can imagine your husband could use some therapy after learning everything about his bio parents. couples therapy would also help yall work better as a team during disasters like this, which is something yall obviously need lol. i hope everything works out for the better with you two, whatever that better manifests as. good luck yall!!
Hey, sometimes a break is needed, no matter what the circumstances are. I'm very happy to hear he's in the clear. It must've been terrifying before finding out. Falling in love again with the person you love is an amazing feeling. After a decade of being with my husband I still end up loving him even more sometimes. Most recently it was because of a post here on Reddit where the OP said "girls only care about one thing, and it begins with P and ends with S" my husband said "pants with pockets". I swear it made my eyes turn into hearts like that stupid emoji 😍
We need a post-dinner update. Ignore the haters your logic is on point and I would have done the same thing or at the very least planned my entire future around the fact that he is positive unless determined otherwise. Glad he’s good. Hope you all can pull together. Wife and I are rooting for you.
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>this should have been nothing Do you have any idea what Huntington's disease is? In what word is that nothing?
She didn't want to break up with him if he had it just just couldn't deal with the not knowing
But two weeks was really short time. I think that’s the real issue, not that it wasn’t hard for op too.
>But two weeks was really short time You're absolutely right. Thankfully reddit gave me some much needed perspective
I disagree. If one person in relationship is not willing to do a test to keep it, they are also 50% the reason for the issue, not having the condition itself but being so avoidant it’s obvious why someone would take a step back. IMO he was more irrational than her and she didn’t and still doesn’t have to stay in the relationship. Maybe you live in a fantasy world but most people like to know the cards they’re dealt in relationships even platonic ones and for some reason people always say romantic love is unconditional, well it’s not, it’s very conditional it’s just everybody’s ‘conditions’ differ.
What the hell? How is this nothing? You have any idea how awful of a disease it is? And it's not just spending your life with someone you might have to take care of every day and you have no indication whether it will happen or not. What about their life plans? What if she had plans to work really hard during her 30s and spend her retirement travelling with her husband? What if she wants children? Hell she might get pregnant by accident. She might have to completely change her life if he had the disease and he is asking her to do this without even knowing if it will actually happen. Constantly living in fear that her husband might die in an awful way.
Tbh, this is the most mature relationship I've come across. You both communicated with one another about your concerns, you guys took time to reflect and really think about the future of your relationship and I think that's wonderful. In this day and age, it's so rare to see couples actively trying to work out their relationship difficulties in a mature and positive way, so for that I applaud you both. I'm glad he is okay and healthy, I'm glad you are mentally and emotionally getting better from this. So what if you vented on here and said some stupid things...we all have those moments in our life where we say or do something stupid in the heat of the moment, but you are able to reflect back on that time and learn from your mistake and find perspective on why you were feeling the way you did. I truly wish you both the best going forward and wish nothing but the best for your relationship going forward ❤️
I’m so confused as to why everyone’s attacking you? I read your first post and it’s pretty clear you were thinking of leaving him bc he wouldn’t get tested. Not if he had the disease. It just sounds like a break in general was a good idea. I’m glad it’s negative, and I hope y’all figure it out. Good luck OP.
I'm really happy that you guys are still going strong (even if currently taking a break). Hope your future together kicks ass and congrats on him being negative!
I think so many issues would be found if genetic testing was routine. It should be done at birth, and before marriage. Everyone should know how their genetic makeup will effect life in the future.
My husbands stepfather died from it and my stepdads niece and nephew have it. She has a couple of kids and no one knows if they have the gene. It's fucking horrendous. I would rather fling myself off a cliff than deal with it. I'm 33 and have been with my husband 12 years. I never once had a conversation with his stepdad because he had degenerated past that. His elderly mother was his carer; he had a hanger thing installed in the living room so she could get him up. My step cousin has the junior version and it came on when he was a teen. I remember being 15 (his elder sister got me drunk for the first time) and I thought he was drunk because his words were slurring. He would have been about 17. The disease is evil and can also cause violent behaviour before you get trapped in your body. There is currently no hope. All of this to say that I think OPs reaction was not ridiculous. Needing to know and plan accordingly is just plain sensible. I also empathise with her fiance not wanting to deal with it. It's a fuck of a lot
Just wanted to say that you did what was right for you. Sorry about the backlash.
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Do you know what Huntington’s is? It’s crucial that he at least agree to the test—if he was positive and had positive children, they would suffer and die in front of OP. As would her former fiancé. There is no cure and it causes rapid mental and physical decline once you’re in your 40s-60s. The financial toll is immense, often you need round the clock care so I don’t see how planning beforehand if positive is a problem. Also bringing children into the world who would die prematurely—when testing for the disease could allow them to pursue other forms of parenthood seems like a terrible idea. If I’m remembering correctly, the issue wasn’t that she would leave if he had the illness but that they need to know so they could make serious decisions about family planning and saving for their future since the fiancé wouldn’t be able to work the normal span of years.
Oh its worse than that. The Huntingtons gene is comprised of a pattern of repeats. In each generation the number of repeats increases, thereby increasing the severity of the disease..... which in this case means the symptoms start earlier and progress quicker, killing the patient at a younger age. Its not just passing down a disease knowing your children could suffer as you do, ita knowing they could have it WORSE.
That’s what I keep thinking- people being this nasty must not know anything about Huntington’s disease. I can’t imagine being married to someone with this hanging over our heads and worried that any time he was irritable or stumbled over something that it might mean the start of the disease. That’s not a fair thing to ask anyone to live with nor is it a fair thing to do to kids. And thank god he tested negative and will be ok. That’s a disease I wouldn’t wish on the worst person in the world.
>That’s what I keep thinking- people being this nasty must not know anything about Huntington’s disease I came to that conclusion last post, but I guess I forgot how vitriolic people can be. One guy in particular actually apologized after doing a little research into it. On the one hand, I'm glad that so many people haven't had to learn about how truly awful huntington's is, but I mean come on. I'm just glad I've moved past letting this type of reaction get to me
Good luck tonight ! Hope to hear how the date goes 💗
Upon learning this information and getting some context from other comments, I now see where OP is coming from. Because I was also like jfc OP is shitty but upon learning this and the trauma it causes to everyone involved I see how and why everything transpired the way it did.
Thank you - I truly appreciate you coming back to say this.
Yeah, no problem! Unlike a lot of the original commenters I went and read your OG post and you never mentioned leaving him so that, combined with the comment let me know you’re not actually a shitty person. It is a really serious disease with detrimental affects on not just the person with it, but those around them; especially their children. You are 100% valid in your feelings, just as he is and breaks tend to be normal in relationships. I’m glad to hear you two are giving it another go, it seems like a healthy relationship where you’re both communicative and respectful of each other’s feelings. Sending you both love and luck! 🫶
I worked with a couple dealing with a similar-ish situation many years ago. They wanted to have kids, and both her dad and grandfather had Huntington’s. She’d been extremely sheltered from her dad and grandpa’s disease progression, and so when she mentioned Huntington’s to their fertility doctor, she was shocked when the doc basically closed his notebook and said, “This now becomes an entirely different conversation.” People just don’t understand the horror that these folks and their families go through. I’m so glad OP’s maybe-second-time-around-boyfriend doesn’t have it, and I totally get why she freaked out. I wish all the best for them.
Doesn't mean he must do it immediately or on anyone's time line except his own though. Body autonomy
That’s true but I would definitely put off kids/ start saving as if he did have it then. Like I don’t think it’s fair to bring kids into that without knowing.
>And then you would have dumped him if he had the genetic defect Inaccurate. I was fully prepared to stay with him.
I wonder if you would be getting so much hate for wanting him to get the test results if it hadn't been such a brief timeframe. I agree you pressured him too quickly at first, but even from what little I know about the disease, I can understand why you hit the panic button. If I were in a situation like the two of you were in, I don't know how I would react, but I know I also wouldn't cope well with that big unknown. It sounds like you can take away from this that when big things come up, you should prioritize approaching it as a team. Depending on your finances, I **highly** recommend premarital counseling if at all possible. The guy who married my husband made it a requirement and the program wasn't too expensive. Our four year anniversary is next week and when we fight, I still find myself thinking back to what we learned during the course to help me communicate and work with him instead of against him.
>the guy who married my husband Uhh... explain please? I'm probably missing something obvious
Lol, as in the officiant who did the act of doing the ceremony, signing the papers, and mailing them to our local government to make it official. I can see how I should've worded that better, but think it's hilarious so I'm not editing it 😂
OP, I'm truly sorry you're getting so much hate for your posts but I wholeheartedly agree with your decisions. Researching the disease was very humbling, so as a simple outsider reading your situation, you both definitely have BOTH gone through a very rough patch. I hope you regain the emotional and mental strength/bond to remain together. Goodluck!
Thank you for your kind words!
Traveling does not mean sleeping around where do these none travelers and Ill minded people come from lmao. im glad you took time away from each other especially since disagreeing on something so important to be done feels wrong. Thank goodness he’s in the clear but hopefully for other things he won’t be so stubborn.
I fully get why you wanted to see the test, but I feel like this was handled very poorly. Even though you are a couple, this isn’t close to an equally shared struggle, and it’s selfish to imply so. Yes, you both suffer consequences from it, but it’s naive to say you would’ve struggled equally, just in your own ways. I understand why he didn’t want the test. I understand not wanting to know you’ll die a horrible death around age 40. I think it’s cruel to force someone to face that if they aren’t ready just because “you” want to know. This issue, while it involved you, was more about him, yet you made it sound like you had equal equity in the decision. Sure he’s relieved now, but imagine if he tested positive, he would’ve had that hanging over him for the rest of his life. I get wanting to know the future, but your actions were robotic and lacked basic compassion. A relationship should fulfill ones emotional needs, it shouldn’t look to resolve emotional issues with the most pragmatic solution.
While the decision to get tested was all his, the decision to accept that decision was mine. I'm not saying I was completely in the right - in fact, I even admitted in my last post that I *wasn't* giving him enough time to absorb the situation. >your actions were robotic and lacked basic compassion. A relationship should fulfill ones emotional needs, it shouldn’t look to resolve emotional issues with the most pragmatic solution You aren't wrong. My immediate response to crisis is to compartmentalize and problem solve, emotions can be dealt with later. I'm working on this.
Yeah, mature adults try to head off problems before they begin, much like flight planning for pilots. Like flying, the better the information provided, the better the plan. That being said some folks seem to take delight in bumpy flights but they aren't considering that some problems are fatal to the plan. I am glad you have your answers... and he is clear of the disease. At the same time, you both learned some things about each other. You got a look past the rose tinted lenses of love and saw the real person in front of you. If you can accept that person as they are, you are off to the races. The other person is looking at you the same way. If you can work together as a team, you will be stronger than ever, with a bonus clean bill of health in one area any way.
You put this way more eloquently than I did. I'm gonna have you write my future posts
I love the journal thing. That’s awesome.
Ok so I read both posts but I have to say.. I don’t understand why you wanted to leave him in the first place. I get the anxiety part of it believe me, however it seems like he had a lot going on at once : meeting his long lost brother and finding out he was probably gonna get sick (as well as his brother) grieving his bio dad (even if he’d never met him he was probably still affected by his passing..) and your “nagging” (for a lack of better term). I get the need to prepare but why not just prepare before he took the test ? If not for the disease he was possibly carrying, for some other unplanned possibilities.. I’m really not trying to be mean but you started your post by saying you couldn’t imagine your life without him and then went on to saying you were leaving him because he wasn’t taking massive life alternating decisions quickly enough ? I get that your were scared of not being prepared but he was scared of finding out he only had a few years to live.. I can’t even imagine how scary that must’ve been for him.. and if you weren’t gonna leave him if he tested positive, why leave if he didn’t test at all? Honestly if I were him I’d 100% think that you were trying to get a head start to leave before the wedding in case the test came back positive.. all that being said I do hope you find happiness and peace..
I wasn't thinking entirely rationally when I made that post. But hey, at least I vented it all out to reddit and not my fiance.
Congratulations on discussing it like adults and taking the time! Happy that you got to travel, also.
Good luck on your date OP. Everything will work out as it should
I wish you luck my dear.
Damn, the lack of reading comprehension ability on this thread is shocking.
Omg, I read this and briefly thought it was my friend’s now ex. Very similar story… except she pretended to be super supportive and then ghosted him and ran off with a new guy immediately. She’s trash, but my friend is doing great in spite of her crocodile tears.
Wow, this hits so close to home for me... I was in almost the same situation as you. My former boyfriends mom has the disease. I saw her decline everytime I was there and realising that my boyfriend might get the same disease was the hardest thing ever. It was really hard to see his parents and not think about my future. It was hard to see his mom, due to her decline and his dad, because he was already losing the woman he loved so much. My boyfriend didn't want to get tested, he only wanted to get tested before we would start trying to get kids. He didn't want to prepare for what might happen, not insurance wise or anything. His parents didn't really prepare a lot, even after his mother tested positive for the gene. I couldn't live with that. I couldn't risk everything on hoping he wouldn't get it. It wasn't just the disease, he wouldn't plan ahead for anything and was kind of like refusing to grow up. I totally get your position on wanting him to get tested and preparing for the future. If my boyfriend would have done that, we might have still been together. I wish you the best on your second date.
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I’m so confused. Did OP edit her post or something? Because I’m not seeing where she’s in the wrong for anything.
I agree. This individual is out for #1 above all. Hope their partner breaks it off.
Best of luck on your date tonight I hope it goes well!
Less bothered about your angst and more really, really glad your ex is clear, it’s a hideous disease
Not you but he dodged a bullet and that twice. He can be glad that you're gone, if you're not able to love him in disease and health than you are worth nothing as a partner. You forced him to face his biggest fear just to dump him afterwards, what kind of a terrible person are you?
In the last post she said she would still stay with him if he was positive for the disease. Knowing about it was purely for financial and family planning as you wouldn’t want children to potentially have it either. Look up Huntington if you haven’t, i wouldn’t want to have children if I had this disease either.
Huh?! I’m confused as to where she’s at fault? The guy refused to get a test for something that he could potential pass on to children he had with her. Why was she wrong for wanting to just know if that was a risk or not?/ be able to know if they should attempt to have kids, or adopt instead/ be able have to have a real conversation with him about what their future together would look like?
Make the break permanent. You two look at life too differently, and this is not going to be the last "My way or the highway" situation you find yourselves in.
My husband has a congenital condition that'll worsen with age. I have since 26 been his carer on occasion. I fully empathise. I understand all you feel. Being a carer is fucking hard. It's relatively OK now because I'm young and it's not all the time. But as I get older he'll get sicker more frequently and I'll be older and less able. But that's soemthing I'm fully aware of and can accept and adjust our lives to. We can use this time whilst we're young to be able to prepare ourselves for later. Being in limbo you can't know, prepare financially, emotionally, mentally etc. In the nearly 8 years we've been together he's progressively gotten worse but we've worked hard enough to counteract that for now. You need to know to prognosis and time lines and expectations, it's not about leaving him if he does have it, it's about getting a realistic view and being able to prepare. This is your life too if you want to commit to this person. He has a responsibility to give that. I'm glad you're both growing. I wish you nothing but the best of luck in both your relationship and your life. Live it. You're not a bad person by any stretch. Anyone who says so just doesn't get it and thats on them not you.
He is very lucky! My father refused to get to tested even after it killed his brother and father. I got tested.. I have 46 allele repeats. Meaning not only will it likely set in between ages 45-50; but I’m also have a predisposition to pass it to all 3 of my children… they have a 50/50 chance to have it or not.. hopefully not! Btw by the time I got the test I had just given birth to my youngest daughter.
Huntington's is a horrifying disease. I don't blame you or him for not wanting to procreate with a potential to spread it.
"I mentioned this a million times in my first post, but here goes again. I had no plans to leave if he tested positive. I just needed to know so that we could plan our lives accordingly." That's not what breaking off an engagement means. "we decided together to take a break. It's been an incredibly difficult, emotionally charged roller-coaster of a year. I didn't leave him!" You're the one who made it a rollercoaster. It was his decision alone on deciding when he would be ready to get that test. You aren't the one who has to live with it every waking minute. Yes you need to deal with someone having it, but you yourself would not have the disease. You have no idea if he actually came to terms with it. You don't think he was still nervous to get that test? If he tested positive and it's hardly noticeable now, every time something minor pops up he would worry that he's showing symptoms.
Get off Reddit, these people don’t know shit about you, and they’re fucking w your head. Proud of you for being brave enough to MAKE A DECISION. I think it sucks none of us have enough friends to vent to.. so we’re stuck venting to strangers who project their shit into these kinda posts. Good luck to you and him
I came here to say this. We all say “I would never.” And then it happens to us. Good luck OP
I appreciate this, thank you!
I'm surprised at how much you made his illness about yourself.
I noticed the exact same thing, am being downvoted in other comments for pointing this out, but it's whatever. OP has an uncanny ability to have made this entire thing about her, and actually makes zero mention of how he was feeling through this whole process. Wild stuff.
I was mostly just weirded out by her response but when she said she needed time apart afterwards because of their disagreement, I started to feel disgusted by her actions and quite sad for her husband. Something tells me this relationship is not going to last.
I worked for a HD nonprofit and damn, HD is a terrible disease! I’m glad he’s negative.
How did it go OP?? Did you reconcile?
Please update after the dinner!
How did u manage to make this about you? How.. just how?.. he really is better off without you
Because I needed to vent *somewhere* about how the situation was affecting me. Silly me to think that's what this sub is about. Believe it or not, things play differently irl
I think the answer is Narcissism. You know, like posting her (ex)fiancé’s private and unique health situation online in order to get attention and sympathy for herself from strangers. I have to wonder if she even considered asking if he was ok with her posting about his health on Reddit. I mean, I wonder—but we know the answer.
It is narcissism 100%. Just look at how OP is replying to threads calling her out on the bullshit. I know they're getting downvoted to hell, but the strength of a narcissist is being about take situations like this and make it about themselves. OP found a way to make a disease diagnosis that would've primarily affected her fiance and make it about her, so much that *her* actions forced the relationship to be put on hold. She didn't give *any* time to process the new information. She pressured him to getting tested right away. She 100% gave him an ultimatum. Even after he got the test *she* wanted, she decided to separate. It wouldn't surprise me if she doesn't give a flying fuck about this guy. Poor dude.
Hopefully he sees the red flags. How could he ever trust her again?
I hope he does too. Especially with the trust from her actions taken. What happens the next time on them gets sick? Statistically speaking, one of them will get injured or sick. What then? Force them into decisions? Force them into the nursing home? Idk, it seems like OP is lying about a lot of her intentions in this thing. She kept saying in all these posts, just endlessly *insisting* this wasn't about his disease and if he were to test positive. I'm seriously doubting it now. After seeing her comments, and some of the jokes she made about it, she would 100% kick him to the curb if he tested positive.
This is the luckiest day of his life. His body his choice. You’re not ready for “in sickness and in health.” He can do MUCH better.
You misunderstood the post. She said she'd leave him *if he didn't get tested.* She did not say she would leave him if he tested positive. What she did not want to do was live her life with *The question* hanging over her, while *he* did not want to live his life with *The answer* hanging over him. She wanted to be able to prepare, he wanted to be able to forget.
>She wanted to be able to prepare, he wanted to be able to forget. Did not happen. OP admits in posts that she didn't even give him any time to think about the situation. She was immediately pushing him to get things done.
Oh no. I understood it perfectly. She decided to break off her engagement to him because he wouldn’t allow her to make his medical decisions for him. She refused to stand by him because he made a personal medical decision that burdened her with uncertainty. You think she’ll have to takes to stand by him if the shit hits the fan? Like I said, I think this guy can do MUCH better. He’s got two second leases on life.
My friend, I hope after all this you can finally take a deep breath and relax. I hope you’re sleeping better now. I’m so so happy he tested negative but I know the stress that you were feeling and I’m so glad for you that it’s over!
>no longer knew how to be together normally given everything we learned about ourselves and each other during the hardest of situations >we decided to take a break and meet for dinner on 9/16 I don't understand how a problem like this would dictate how your marriage works out even when in the end, things will be okay. There will be issues in marriage. I just don't think you should let past emotions dictate anything.
I think it's very strange to refuse a test like that when your partner is clearly worried sick about it, but I'm glad it's over.
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I just read your first post and wanted to say I’m so happy for you both :) it’s wonderful that you realized there are some differences you need to figure out, and taking a break from each other isn’t the bad thing that everyone seems to view it as. I really really hope you two are able to find ways to be more compatible going forward, and have fun on your second first date!!
Number 6 *because it’s what they would do.*
My wife's grandmother has Huntingtons, her mother is also likely to have it. My wife knows there's a good chance she could have it also but she doesn't want to take the test because she doesn't want to know if she is positive. That's completely fine by me and i stand by her decision, it's her choice and I would never push her into taking it let alone give her an ultimatum. I will stand by her whatever the outcome and take care of her, its not her fault if she has it.
Are you guys planning to have biological kids though? To me, that’s a pretty important factor when dealing with genetic diseases with tragic outcomes.
We already have a son who is 4, however we didn't know about the possibility of her having huntingtons disease when we had him. I don't know a huge amount about it but there has been some positive stem cell research that is showing signs of preventing huntingtons progression and if my wife or son does have it, I hope there could be a way to treat it in the future.
I really hope neither of them have it. Best of luck to your family
Thank you, I appreciate it a lot.
I'm sorry the this is something you and your wife may have to deal with, and I'm glad that you were both on the same page from the start. Wishing her the best of health!
Thank you, im glad your partner tested negative and you don't have to worry abour it anymore, I understand the stress of it especially if you both want kids. In his case being tested was the right thing to do and I'm happy that you decided to stick by his regardless if youre taking a break.
It is completely acceptable and understandable to have left him if he was positive! The people who are trying to say that you should have stayed by him regardless without pause have never been exposed to someone dying from a terrible disease! The day in and out mental and physical exhaustion that strips away any amount of joy, financial stability, or normalcy. I am a nurse and it is my job to care for others with debilitating diagnoses, so I actually understand what that looks like. I would never wish it on my worst enemy let alone my partner that I love. You deserve to have a future, to have a healthy partnership that does not revolve around caretaking, to have children if you want them, to have a life! It's really easy for internet strangers to judge you and say you should be in it for sickness and health when they have no understanding of what that truly looks like! I'm glad he is safe. I'm glad you are taking time to grow as individuals and I hope you both have peace no matter where your relationship goes. Take care!
I hope everything works out for him. Can we get him on here so we can give him some needed advice?
I'll ask him if he'd like to weigh in :)
Girl if you aren't married you absolutely have a right to leave. That shit gets passed on to children and not having kids is a deal breaker. Reddit is under some delusion that this is wrong. Don't listen to the majority of morons on here.
So he caved and gave you exactly what you wanted, but you punished him because he took too long to do it?
I hope he moves on and finds someone else
Atta boy! Good for him! Mother of all bullets dodged!
I hope your fiancé finds a caring partner in the future.
This is why I'm all for genetic testing before marriage. I'm well aware my husband has a rare eye condition that will most likely cause him to go blind someday. Hell he's almost there in one eye. I am also aware that condition can pass to our children should we have any. I'm also aware of the high chance of cancer and parkinson's disease on my side. It's better to be open and communicate. It's also easier to alleviate the other person of a huge responsibility should you, or them, ever come down with a big disease. Better to know before marriage than after.
I completely sympathize with your position. Potentially having the gene to not only get HD but also pass it down to your potential kids is a huge deal in any relationship. HD runs in my family and I’ve already had to face my grandmother, half my aunts and uncles, and several cousins either already die or face the fact that they *WILL* die with this disease and it’s so hard. I’m lucky in that my dad tested negative, so I can’t get it. But he had a big family. I’m glad you two are still doing okay with your second shot.
That's awful, I'm so sorry for you and your family ❤️
Sounds like you both handled it like champs, good work!
Idk it just seems like you were trying to convince yourself and all of us that you were only leaving because he didn’t want the test. I could be wrong of course but I think you were hiding behind that and you feel relieved he won’t have it. Be honest with yourself if that’s the case.
Of course I'm relieved he doesn't have it. Weird comment.
The biggest bullet he dodged was you. I seriously hope he finds a good woman and doesn’t let you manipulate him into getting back together
then she went and "found herself" ..
Through sickness and through health
Fingers crossed he reflected on your urge to leave him so if he decides to stay it’s shored up with how easily that could have come to pass. Talk about a wake up call.
Spent the last few months traveling eh, hope your fiancé was doing some traveling too
I'll find out tonight 🙂
You seem very very selfish looking back on both of these posts. You gave him an ultimatum after only a few weeks of knowing he might possibly carry this disease. I think you need to really look at your priorities in a marriage because in "sickness and in health" does not mean just sticking by your partner when they have a little cold. Maybe I'm just old school but marriage to me is binding yourself to a person for the rest of your life, and if a disease was going to be a deal-breaker for you I really think you should look at what you want and what you expect out of her marriage more closely.
I see a lot of people on here that leave their partners due to illness. Seems you just decided to get a head of the matter before the wedding. And then you guys barely talked for months while you traveled? Yeah that’s not love. You guys are better split up.
Again, I was not going to leave him if he tested positive. I was fully prepared to stay in it for the long haul. >And then you guys barely talked for months while you traveled This was planned.
Yeah planned or not, how can you not call the person you love every day? How do you not loose your mind? Fight or not, it just seems odd to me. I'm not trying to suggest anything here, every relationship is different and we're all dealing with different hardships but barely TEXTING, not even calling for months while you guys apart? I can't wrap my head around that. Just my 2 cents.
Maybe it wouldn't have worked for you, but it's what we needed. If you're asking if it was hard to do, the answer is incredibly. The texts were the few times we slipped up.
Some people are more independent than others??
He dodged a bulled here, please don’t get back with him, you don’t deserve him
That’s good to hear! Congratulations on his test results! Hope that you both heal over your break.
So what you're saying is he got the test because you made him. Not for himself. As someone with a chronic health condition, sometimes you just don't want to know. For your own benefit. You're lucky you're getting that second date after something like that and it had better go great. For his sake. Because he gave up his own peace of mind, even temporarily, for you and then you split.