Woman threatens to leave fiancé when he reveals he has a fatal disease. AITA? 2 MAJOR UPDATES
"Woman ends her engagement when she finds out that fiancé has certain disease. AITA?"
"I'm breaking off my engagement because my fiance might get sick in the future. AITA?"
I'm breaking off my engagement because my fiance might get sick in the future. My fiance and I have been together for five years. He's the love of my life and I literally can't imagine being without him. So the thought of doing this is making my stomach roll.
He was adopted and neither he nor his parents knew much about his medical history. A few weeks ago, he met his biological brother for the first time and found out that his birth father had passed from Huntington's disease.
There's a 50% chance that my fiance also has the genetic defect that causes Huntington's, but he refuses to get tested.
It's not the disease I'm scared of, it's the not knowing. If we know he'll get it, we can prepare financially, practically, and emotionally. He says a positive test result will hold him back from living his life, but I feel like it's the opposite.
How can we live with this giant maybe looming over us? How can I make smart decisions on where to live, how to budget, or even whether or not to have biological children with this man if I'm not allowed to have all the facts?
So, I've come to the decision that I have to break it off. I respect his decision, but I can't understand or accept it.
I have literally no one I can talk to about this because it's his fg secret and not mine to tell.
Edit: I have to go to work now, but I'll try to continue responding throughout the day. Especially to the comments that exactly mirror the dissenting voice in my head. I just want to clarify a few things up here:
I would not leave him if he tested positive for the defect. I would not leave him if he got sick. I just want to plan for us to be able to afford the best life and care for him if he does - which means we'd have to start immediately.
I don't want or need 'perfect' children. That isn't realistic. But it is possible to avoid them being subjected to a 50/50 chance of having this disease. Of course there are alternative options, but again: they involve preparation and planning. I'm more than willing to take a full genetic panel as well.
Yes one or both of us could get cancer, or permanently disabled in an accident, or any other number of things. But I've come to learn that you can't plan for every unpredictable thing life throws at you - this is the rare occasion that we do have the opportunity to prepare.
Essentially it comes down to the fact that we're incompatible, regardless of how much we love each other. I'm a planner and he's very laid back.
Until now, these traits have complemented each other, but unfortunately they've brought us to an impasse that I don't think we can both move forward from happily.
Second edit: I'm floored at all of these responses, supportive and... otherwise. At the very least, I feel validated that this is a complex issue with no clear and obvious answer.
I've decided to take a few steps back. Those of you who brought up the fact that a few weeks is probably too little time for him to fully process his possible diagnosis have a really valid point. Just because I want to immediately jump into problem solving mode, doesn't mean it's necessarily the right thing to do here.
So, I'm not leaving. Yet at least, and hopefully never. I'm going to find a therapist to help me work through my anxieties and give my fiance some space (not literal) to work through his. And then we'll revisit this conversation, hopefully with more patience on my part and willingness to act on his.
Before we give you OP's major update, let's take a look at some of the top responses:
implodemode writes:
My husband has been battling heart disease since he was 31 and could have died at any time. That was decades ago. It definitely has affected how we live. I have taken risks I never would have because I didn't want to keep him from living his best life now in case he doesn't get a tomorrow.
And so, we did not save as I would have liked, but I learned to become more adventurous. I likely did not make all the smartest decisions, but life has rarely been boring.
Anyway, I totally understand your need to take control where you can esp when it comes to having children with this man. It is irresponsible to not have all the information you could have.
However, he may still be processing the information and may come around. I would def postpone the wedding if needed, to give him time to accept it. When you are a couple, sometimes, you have to accept some personal discomfort in not getting your way right now.
mediocread writes:
If you feel like you would be able to handle coping with caring for someone with this disorder this would be what I would suggest.
Give it a bit longer and therapy if possible. A few weeks is not long enough for it to sink in for your fiancée . If still not going to get tested:
Lay out the fact that you are not willing to roll the dice with bio kids without testing. See if you agree on the alternatives and financial planning for that. For me personally having kids was a must so we agreed before hand how/what we would do if problems came up (adopting/fostering/egg or sperm donors etc).
Plan to be more frugal however not let yourself get stuck not taking opportunities. If you live your life like it's already over as the person who is sick (or might be in the future) it can suck the life and joy out of the good non sick years and make you feel like a burden instead of a person.
If you are stuck only planning for the end point staying is probably not fair to either of you. (Again therapy and good communication helps with this)
I would also maybe look up stories of other families with the disorder to really understand what it looks liketo live with. From what I have seen even siblings who have watched their parents live and die from it have different feelings about getting tested and that is why they don't typically test children until they are adults.
I personally think I would get tested but until you are the person with the option no one can really know for sure. Please don't begrudge them for not jumping on it especially since it's still 'new' info.
Also they may feel differently as time goes on. If you can agree on these fundamentals and can keep open and honest communication it can work out.
elizabethclara writes:
I’m dealing with this right now, except I am the one with the possible genetic disorder. I have two children, 50% chance per birth. I’m starting to see signs of the disorder in my 8 year old.
I am 37 and currently can’t work while this is figured out. Thankfully my partner is in a well paying job and we can get by until I hopefully get treatment in the next several months, but it completely destroyed our short term plans.
If I had known this would happen when I was younger, I could have been on medication long ago that would have prevented this painful and scary situation I am currently in.
Should my results now show the generic condition, my children will be tested so that we can handle whatever comes up with regard to the disorder. I am so thankful that this is a treatable condition, but it is also not curable and I would give up a lot to be able to go back and figure this out in my 20’s instead of now.
I don’t find it unreasonable to want to plan for a future with medical issues. From what I am learning as I age, everyone has something that’s gonna come out, and if you can get a head start on figuring it out, your quality of life can be better.
I’ve also dealt with my partner discovering problems with their own mental and physical health in our early 30’s and people are correct to point out accidents and such can happen at anytime, however, this is something with a genetic cause that CAN be prepared for.
Too many comments are assuming OP just wants to abandon a sick partner when the reality is, planning is fg smart and OP’s fiance is refusing to acknowledge serious issues that could come down the line that they literally could find out about now AND actually plan for so their lives don’t turn upside down later.
beito writes:
The people who were downplaying Huntington’s don’t know what they are talking about. Huntington’s is always fatal and always the last few years of the persons life are horrific. That is a serious consideration especially when passing it on to kids.
whatsits writes:
My cousin was 24 when it killed her. She was 15 when she was diagnosed and I was maybe that age when she died. I've had a lot of terrible things happen to me at every stage of life that I've struggled through the work of processing.
Watching her waste away, brain rotting away while she lived, becoming a horrible twisted shadow of a young teenage girl when she was in her early twenties, the awful shuffling and posture and terrible heartbreaking attempts to speak coherently... It isn't a thing people get over.
It's a box I reopen when I want to remember how truly awful it all can be.
cageytalker writes:
As someone who was diagnosed with an incurable disorder only a year into marriage, I totally understand OOP. My husband was and has always been amazing, even when this rare disorder led to complications.
While I am a planner, I know that there is nothing that can prepare you for life’s curveballs. Sometimes I wish I knew what I was in for to better prepare us.
Of course that’s not the case and I accept that but if I had that chance to know, I’d take it in a heartbeat. It wouldn’t have changed anything for us…I know that, especially after everything I’ve gone through but at least we’d have an idea.
It sounds more like OOP and fiancé never really had a disagreement before or something big enough to make them evaluate a real problem in the future.
When you’ve found the one, you think you are ready to take anything and everything but again, you don’t know what can make or break you. Even me with a supportive husband, we just lean on each other and try our best. That’s all we can ask for.
I have hope for them. They were given a rare peek into the future even with the negative result. Now with some space and perspective, they can see if they can translate that into long term. Sometimes people don’t find this out till much later into their marriage.
rbaltimre writes:
Four years into a relationship I was diagnosed with Multiple Sclerosis. It’s an incurable autoimmune disorder that can and often does lead to extensive brain damage. My boyfriend was with my when I was diagnosed, and I tried breaking up with him right there in the ER.
He told me no. He would accept being dumped if I had a good reason, but that this was a very stupid reason. I didn’t have the emotional capacity to argue about it. He’s now my husband, we’ve been married for 15 years.
I understand where OOP is coming from. I understand needing to know. I especially understand needing to know before you have kids. MS is not typically hereditary but I wanted actual numbers before we had a kid (my son’s risk is 1%). People were giving her a hard time but I get where she’s coming from.
dopeycare writes:
In a way, I understand why he wouldn’t want to get tested. There’s a great episode of scrubs about Huntingtons, and in the end the guy whose mom has Huntington’s says he doesn’t want to get tested for it and when asked why, he says “once you find out you’re gunna die from something, once you learn that information you can’t unlearn it.
This way my future is still mine.” But on the other hand, I think your SO should have the right to the knowledge of whether or not they will have to deal with an early, difficult death, possibly have children with the defect, and as OOP said, just financial planning.
It’s kind of similar to someone wanting their own birthed children getting into a relationship with someone who knows they have a high chance of being sterile.
And now OP's first major update a few months later:
Hi! Remember me? I posted earlier this year about my fiance who was refusing to get tested for Huntington's after learning he had a 50/50 chance of having the genetic defect.
Some of you gave me great advice and support, others the wakeup call I needed, and the rest of you... well, reddit gonna reddit.
I'm not sure if it was obvious, but I was not in a good place when I made that post. When I stress, I don't sleep or eat. For him, it may have "only" been a few weeks to accept the situation, but for me it was a few long weeks of nonstop anxiety...
where I was lucky to get even an hour of restless sleep a night. I was plain exhausted on top of everything else and only began to consider leaving when I started to hit my breaking point.
Anyway, we talked about it. At length. We cried, we fought, we researched, I showed him empathy. We consulted with friends, family, and specialists. We pressed pause for days or weeks when we needed a break from the whole damn thing... and in the end he agreed to have the test.
Guys, to say we dodged an absolute maelstrom of bullets would be putting it mildly. He's negative - both for developing the disease himself as well as the risk of passing it on. No matter what else happens, this is one area where he's assuredly safe.
All of this said, once the euphoria faded we decided it was necessary to put a hold on our engagement and take some time apart. I still love him with all my heart, but this was our first serious disagreement as a couple and it forced us to seriously reflect on ourselves and our relationship.
Neither of our positions were wrong, but they were so disparate that there was no realistic compromise.
I've spent the last few months traveling abroad, and other than a few texts we haven't spoken much. But I'm home now, and we have our 'second first date' tonight. Wish me luck!
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.
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!
We planned from day 1 to keep communication to a minimum. It was difficult. I actually began keeping a journal of all the things I wanted to call or text him about. It's extensive, and I can't wait to share it with him.
I didn't give him an ultimatum, but I understand why that's the takeaway. I only told reddit that I was thinking of leaving, and I know that it was rash and irrational.
No, I'm not going to KMS. Sorry if that disappoints you.
Why does everyone seem to think that traveling means sleeping around!?
Just gonna leave a little timeline here for those of you who think I've been traveling since my last post:
he learned that he was at risk of developing HD, I posted on reddit when I reached my own breaking point and needed to vent about how I was affected, we spent the next three-ish months discussing next steps, consulting professionals...
meeting others in our situation, etc., he made his own decision to get tested, that took a while, since there are a lot of steps you have to go through before they'll even agree to do it
we learned he's negative! , we rode the emotional high for a bit, then realized we weren't the same people we were at the beginning of the year, and 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'm now getting ready to leave for said dinner.
8 and I swear this is my final edit) I meant to say this last time too. Thank you to all of you who are sharing your stories about HD, chronic illness, and love.
I'm sorry I haven't responded to everyone, but I'm reading all of them and wishing you and your loved ones nothing but health and happiness.
OP's second major update, many months later:
SECOND UPDATE: I'm breaking off my engagement because my fiance might get sick in the future (no I'm not, this is about our date)
This title continues to be embarrassingly bad (and now irrelevant), but I kinda feel like I'm stuck with it now. Sorry
If you're new here: my fiance found out he was at risk of developing Huntington's Disease. I wanted him to get tested and he did not. Months later, he did and thank god, he was negative. The whole thing put such a strain on us that we decided to take a break. Last night, we went on our second first date.
And I can't believe how many of you want to hear about it! Of course I couldn't leave you hanging, but there are a few things I want to address first so please bear with me for a few more sentences.
It feels like many of you are determined for there to be a 'bad guy' here, but please don't put this label on my fiance. He doesn't deserve it. He's not a jerk, an asshole, or an ostrich. He's a man who was suddenly forced to face his own mortality. He had a very human response, and I didn't make it any easier on him during those first few weeks.
On that note, it's great that so many of you guys always react perfectly to every tough situation life throws at you. I'm sadly not like that, sometimes I f up like I did by not initially giving him enough time to process. But I owned up to that, took several steps back, and he forgave me. I don't know what else you want from me.
Lastly, there are a lot of comments about how the obvious compromise was to just act like he had it. But you know what, it was the idea of living like he was dying that actually drove him get tested.
He didn't want us to unnecessarily save half our paychecks instead of using them to enjoy life. Or deal with the complications of IVF if we don't have to. Or forego opportunities that didn't play nicely with the end of life care plans we'd be making.
Essentially, he concluded (in his words) that the cat was already halfway out of the bag and it could come out but it was never going back in. If he was positive, we'd be obsessing over every little thing being a possible symptom. But if we left things as they were, we'd be doing that anyway.
That doesn't mean it was easy at all. We actually had to make a second appointment to get the results because he couldn't bring himself to hear them the first time. But that was okay, I was there for him the whole time to support him however he needed me to.
Okay! I'm done with that, onto what you actually clicked for. Do you guys know the feeling of watching your favorite childhood movie for the first time in years and being nervous that it won't hold up or have the same magic you remember?
That's kind of what I was feeling yesterday, and I actually have to thank everyone jumping down my throat in the comments because you did a great job of distracting me from the butterflies in my stomach.
Well, the magic was still there. We may have spent months apart, but it didn't feel that way at all. In fact, everything felt even better and more comfortable than when we parted; we felt like the happy couple we'd been back in January before this whole thing started.
It was like there was a weight hanging over our relationship that was keeping us from actually moving forward despite the good news, and it's finally been lifted. Before last night, I couldn't remember the last time anything with him felt bright and easy. But we're back, baby.
I know the general consensus was that this was a dumb move, that we should have opted for marriage counseling instead of going our own ways for a bit. I'm not a relationship counselor, I'm not recommending this method to anyone.
I don't know why it worked for us. All I know is that we were both so drained at the time and we each had the same gut feeling that a complete separation was what we needed. Our relationship had become far more exhausting than fun and I honestly believe that we wouldn't have made it if we'd forced ourselves to work together to fix it.
Again, don't take relationship advice from me. But trust your instincts - you have them for a reason.
And I'm sure you'll be happy to know that he wasn't sitting at home pining for me while I traipsed around Europe not having se% with people! He was busy with his own adventure - he bought a car (we live in Manhattan, so that's a pretty big thing) and road tripped across the country.
We stayed up all night sharing stories and pictures and telling each other about the people we'd met. It was absolutely amazing sharing our experiences with each other. I know it may seem like it would have been better if we'd done it together, but there was something really special about living it through each other's eyes.
Anyway, we have the rest of our lives to travel the world together. Because we're not breaking up, suck on that people who were hoping he'd leave me.
Look, we know this new honeymoon period we're in won't last forever, but I really think we're prepared to handle whatever other challenges life tries to throw at us.
Honestly, there's a pretty good chance we've already gotten through the worst one (knock wood), but even if there's something bigger and badder waiting for us I'm completely optimistic we'll be okay.
So, that's that. We've officially reached the other side of our first major life issue together. Did either of us behave perfectly? No. Are we going to be perfect next time? Proooobably not.
Are we 100% committed to combining our completely opposite ways of dealing with crises into a superpower designed to crush conflict like a 90's cartoon? Absolutely.
Thanks for listening to my story everyone. Roll credits.
Readers continued to weigh in on OP's updates:
So happy for this update. I was rooting for y’all. I’m so sorry for all the hate you got. I think your position was reasonable and I understood his as well. Most ppl that were talking crap have never experienced anything close to what y’all did. So glad it made you stronger.
withelle writes:
No idea where the negativity is coming from. I read all three of OP's posts and still don't understand. Life is messy, people have incredibly different ways of reacting to stressors, and it sounds like this couple really went through it and came out the other side. If you read this OP, many years to you and your partner both!