My fiancé and I have been together for 6 and a half amazing years. Our relationship started when we were both in university and lasted until now when we’re both working and have moved in together building a beautiful life in the process. It genuinely has been perfect, we love and support each other so much and there hasn’t been a single major issue. It’s honestly been a fairytale and we got engaged last year in June.
A couple of months before the engagement, I was screened for a genetic illness that my mother has. It is a pretty devastating disease that means that the sufferer loses their motor control later in life and often in a wheelchair by around 40/50. They will also likely need late-life care. Unfortunately, my screening showed that I had the disease.
I know this would have a massive impact on my girlfriend, and I tried to give her an opportunity to consider whether this news changed how she felt about me and whether she would want to consider pursuing a life together despite the challenges that lay before us. During this time, she was incredibly supportive of me, told me she loved me and wanted to stay with me. Because of this I proposed and we got engaged.
Fast forward to Feb this year, we hadn’t done any wedding planning despite my constant desire to get a date down. After some pressing, she told me that she hadn’t told her parents about my diagnosis out of fear that they would tell her to break up with me. I told her this is something she’d have to face eventually (and she told me she had decided to stay with me) so I kind of forced her to let her parents know. They blew up. They basically told her it’s either me or them.
Her parents are first generation immigrants (like my own parents) and hold fairly traditional beliefs. During this time, they’ve been generally supportive of me, and I had even asked her father for permission before proposing, to which he agreed. However, once they found out about my diagnosis, they went nuclear and told my fiancé that health is the number one key to happiness in life. I gave my fiancé about a month to decide whether she’d want to stay with me, or leave me. During the last week of this period, I spent time at my parents to give her some space to make her own decision. I was keen for this decision to be hers alone. Unfortunately, her parents did not agree, and her father visited her 3 or 4 times over this period. Her mother also sent incredibly guilty messages, suggesting people would think of her as a “loser” for staying with me and that she would never forgive her if her father broke down (who’s dealing with the onset of illness of his own mother).
Unfortunately this led my fiancé to deciding to leave me, practically making a split second decision when I told her the month was up. It was incredibly heart breaking to leave 6 years of pure bliss on what felt like an unfair decision and thankfully she too felt that way. We met up 2 days after the break up and told me she wanted to make things work between us. However her parents have been sending her messages since she told her that she was leaving me, telling her that her father is her families’ rock and that this would have broke him and her family. I know she cares a lot about her family and this is making her mind flip-flop. I have arranged an emergency therapy session for her in a couple of days time, but knowing how easily my fiancé can be manipulated by her parents, I’m worried she’d turn on me again and force me to leave the life we’ve built together, again.
I’ve tried to be fair and honourable to the woman that I love and I understand this is an incredibly difficult decision to make, made incredibly more challenging by her family. I know she doesn’t want to turn her back on them, but she has told me that if her parents were supportive she would have chosen to stay with me. I know they will get desperate if she tells them she wants to be with me and this may get her to choose the easier option (which would be to leave me rather than her family). How can we/she approach this situation with her parents?
TL;DR I was diagnosed with long term illness which my partners parents have only just found out about and are trying to break up our 6 year relationship. She initially chose to leave me then regretted her decision, and is now unsure how to approach her parents to tell them we want to be together. What can we/she do to overcome this challenge?
31 comments
Question: were you actually diagnosed or do you “just” have genetic markers? Because having markers doesn’t always mean you’ll end up sick with the disease. In some cases yes, but not in all. I did a genetic panel last year due to some things running in my family and the genetic counselor was pretty clear that even with a market it’s not 100%.
Anyway….I don’t think anyone can really know what it’s like to be a caregiver until they’ve done it. I can imagine it’s hard for her to make a decision with no experience and parents telling her to bail.
I dunno. I think I’d ask her about concerns she might have and what strategies could be in place to mitigate. Like maybe you don’t have kids. And maybe you have to hire a caregiver.
I think you two need more time together to discuss not this separation.
Just to be clear this is Huntington’s right?
I’m guessing you’re talking about Huntington’s Disease or similar.
First, I’m very, very sorry that this is your lot.
Second, this is impossible all around. At 24, you think that 40 or 50 is forever away, but it’s not. You think that love is enough to make intense caregiving A-OK, but it’s not.
The salient practical questions are these: does she want children? If so, can the two of you afford the genetic testing and IVF to ensure that you don’t pass this gene on? If not, is she willing to forgo children to be with you?
Second, do you have enough money to hire the in-home care that you know will be necessary in 15-25 years?
Third, you may well spend the last 10 years of your life in some kind of assisted living when home care is no longer practical. What does your marriage look like then?
Fourth: are there any treatments in place now or on the near horizon that will extend your quality of life?
I’ve known one family with Huntington’s. This was many years ago before genetic testing was available. The man I knew was married to his second wife when his father was diagnosed. When the man was informed of the genetic link, he opted not to have children with this woman. When he began exhibiting early symptoms of the disease that ravaged his father, he left his wife because he didn’t want her to have to care for him.
Your gf has to make this decision on her own. The reality is that she is signing up for a very difficult road if she chooses you – and that’s ok if that’s what she wants. However, the life that she will eventually be living as your caregiver will be made infinitely more difficult without the support of her family.
In many ways, it would be easier NOT to know what’s on the horizon. We’re all playing the odds when we marry. In this case, though, she is required to give informed consent when she marries you, and that’s so much more difficult than than the theoretical “in sickness and in health.”
Please give your gf space on this one. Let her work with a counselor, and try not to pressure her. She needs to come to you independently despite her family’s misgivings or not at all.
I know I am oversimplifying it, but you should not plan to marry someone willing to choose their parents over you. I should perhaps reiterate, if you want to marry someone, that person should be willing to choose you over their parents.
I think you should tell her that, unless you can trust her to make such a decision, you can’t plan a future with her. Her parents will make her choose between you and them, so you need to know her decision, and she needs to state her decision clearly to her parents.
Sounds harsh? Well, not as harsh as the possibility of being abandoned by your partner when you need them the most.
You forcing a decision in the span of a month was a bit of a sabotage.
She’s probably still reeling with, grieving, and processing the news of your disease and the mortality of the man she loves, in addition to thinking what it means for her future if you stay together (children, caregiving, etc) and the pressures of her family. This is not a decision she needs to make in a month.
It would probably be beneficial for you both to attend a visit with your genetic counsel together. You also probably need some time to evaluate whether your desire to have this decision made right now is also coming from a grieving, self-pitying, and reactive place where you hope to push her away, or if you can see the ~20-30 good years you may be able to have together as well. This part “in between” is what you need to get her parents to focus on as well.
20+ years is a long time, and there may be medical advances, or (not to be too morbid) death with dignity options that may be accessible to you if the focus is on that inexorable end-of-life stage.
You don’t. If she bailed because her parents said to she is always gonna side with them over you no matter how much it hurts you. She’s shown she can’t be relied on when things get tough. It sucks but she isn’t going to suddenly be super supportive. She showed you who she is. You’re young enough to find someone who actually will mean the “in sickness and in health” part
Let her go
I will speak from my perspective as someone with an incurable disease that, mercifully, is being effectively treated with medicine, but, if not, has very severe lifelong effects or fatality. I am also in a relationship that experiences this kind of one-way struggle (in your case, she has to accept the pain of losing you and the friction with her family).
My opinion is the likely thing you will experience as you both continue to learn and grow is occasional volatility in her commitment because she is reacting to incidental challenges with that instinct to run. She will likely ultimately overcome that instinct as she did in your description but not without the temporary pain and fear that hurts a relationship. The best way to work this is to have long heartfelt discussions about that inevitablility and to come up with the ways you both want to handle those moments jointly and individually so that you’re not both improvising or operating on adrenaline. Maybe find counselors that can be retained or a network of friends who understand etc. the key here is that you’re both rational and stable. You can trust each other to develop these contingencies so you have the support network you need rather than just letting things take shape in real time. Through these discussions you can also gauge how much conviction you both truly have to being committed despite the worst case outcomes you can explore.
Best of luck, this can be done. And hold out hope that by 2040, there are breakthrough cures for lots of contemporary diseases.
do you have Huntington’s?
Is she a grown up or not? She can tell her parents to live their own life tf? I think you deserve better than for for the rest of your life tho. You really want drama while sick?
She needs to think for herself, not her parents. She needs to get therapy and figure out what she wants, not her parents, it isn’t their marriage.
When people marry, they are each other’s 1st concern.
OP, I have a personal rule that I don’t tell people “I’m sorry” when they have an illness because I have an illness and I know how old that gets fast.
This SUCKS!
As this progresses, you will want someone steadfast by your side. She is showing symptoms of not being that person.
– her refusal to tell her parents meant she knew this was how they would behave. She didn’t disclose that before you insisted she tell them.
– she accepted distance from you during the decision month but didn’t insist on it from her parents.
– she makes impulsive decisions and regrets them later.
Is is extremely vulnerable to manipulation.
Sadly, being with you is a hard road. Caregiving isn’t for the feint of heart.
Not to sound too transactional, but you may be wise in suggesting she take a few courses in caregiving. Being a CNA could help her later on when you need the care, but also would get her the experience to know what she is getting into.
Also, consider if children are an option. If you had kids today, they would be 10-15 when you decline your wife would go from caring for small children to caring for you with almost no time in between.
Add in that her parents are probably banking on her helping them as they decline (they seem like the type). And she is going to basically have 20-30 years of being a caregiver for 3-5 people.
She wont be able to live her life until she is 60+ and that is assuming the money hasn’t run out by that point because she likely will be taking care of so many people that she wont have time to work.
If you do have kids, they will be at a significant risk of parentification even if 100% healthy. That can really mess people up over the years.
Consider a long engagement at this point. I know you are excited to set a date, but her taking a few caregiving courses and maybe volunteering in a skilled nursing facility might help her understand the challenges.
A long engagement could also give her parents time to either calm down and stop being asses or to really show their true colors.
There are no good answers, only shades of bad.
For both your sakes end it. She will forever question if she should have made a different decision and you above everything else deserve someone who loves you and will stay by your side.
Leave.
Her parents are not going to change, and your Fiancé is likely to change her mind again, especially with pressure from them.
I think what u really need to do is sit down and talk about what ur lives will truly look like while u have this disease. Do her parents have money? And is she worried about being disowned or put in a will of some kind? Or does her family depend on her for financial help? Either way she needs to also consider what her relationship with her family will be if she chooses to stay and if that is ok with her. If her family really believes it’s u or them, then she needs to decide if she is ok with not having a great relationship with them and mostly relaying on u for family support. This is a hard decision to make and u need to decide if u are ok with her taking care of u, instead of her being able to live for herself. These are things u both need to decide and really have long discussions about.
While I think any concerned parent would advice their son/daughter to really think what they are getting into, they were very mean by the way they went about it.
I think you were wrong to force her to make a decision in a month and then basically were like “the month is up, make a decision.” Why the rush exactly? She shouldn’t take a year, but a month? Most life decisions take longer than that! And she probably had other things going on in her life…that’s just so weird to me. And it’s not like you are waiting for her decision to make some type of decision. It also sounds like you want to pressure her into deciding a date for the wedding. Why? She needs time to process all of the new information.
I disagree that if she were to leave it would be “unfair.” She is signing up for a life of being a carer, possibly not having kids if she wants them, and financial difficulty. It’s her life and any decision would just be a decision, no fair or unfair.
>I’ve tried to be fair and honourable to the woman that I love
I disagree! You pressured her to make a decision in a month and have been hounding her to set a wedding date. It’s like you want to lock her into the decision before she can make up her mind or whatever. She is 24 year olds. She is barely an adult. I doubt she truly understand what your diagnosis means for her life and your life together and for her future.
I think you need to live apart and give each other space. She needs room to breath and think about her life. You only gave her a week alone and 2 days after she left you called her. You gave her ZERO space.
And who is going to be her support when you need care? Her parents are not supportive. Your mom cannot help. And your dad is your mom’s carer and will be too old, I’m assuming. So your current GF is going to be all alone, basically.
It’s absolutely complicated for your gf and I feel for you and her. Having said that, the values her parents have and the cutthroat mentality they have with health is gross. What happens when their health fails? Should your gf abandon them?
Sadly, this relationship is sunk. No matter how much she loves you, her family has pumped her head so full of guilt and doubt. The minute her dad gets sick, she’ll be blamed by everyone forever. She can’t survive that mentally.
Yes, you could be a couple but it all comes down to how strong she is and willing to be NC with all of them.
I would like to offer you some perspective. If I found out my husband had any health issue, whether it’s a debilitating genetic condition, cancer, a traumatic brain injury, etc. and someone told me to leave him, I would laugh in their face. If my family told me that they would disown me unless I left him, I would say, “I’m sorry to hear that. Have a nice life.” I understand that there may be cultural differences in your situation, but there are plenty of women out there who are brave enough to tell their parents to fuck off and they exist in every culture, even when doing so could be dangerous. With your condition, you are going to need someone who is strong, resilient, and loyal. You need someone who believes that the life you will have together will be worth it. Is your fiancé that person? I can’t speak for you but I would need to see some proof before giving her another chance.
You seem to want to know if she loves you enough to marry you. You should ask yourself if you love her enough to let her go.
So if your condition is genetic, are you guys planning on having children? I assume you’ve spoke. on the subject of y’all have been together so long.
In sickness and in health. Those are the vows. My husband is having bypass surgery on Monday. This is after he had a heart attack in august. I didn’t anticipate this when I married him but I took those vows and I have been with him every step of the way. Don’t marry someone who isn’t prepared for what is coming. Her parents will always be able to manipulate her. You deserve someone will be there for you during good times and the bad times.
If you would have been diagnosed after your wedding would her parents have demanded she divorce you?
Clearly a difficult situation all around, but given her reaction and you mention how her parents manipulate her easily, I don’t think she is dependable.
Her parents approach is awful and clearly she won’t be able to maintain a relationship with them if she decides to stay.
I wish I had good advice for this.
All I can say is I’m sorry about the test results, and that you’re an incredibly stand up person for giving your partner the information and time to reconsider the relationship based on those test results.
Do not get back with your ex. She left you in your most vulnerable moment. If she really loved you, she would have stayed by your side in your time of need. Remove that family from your life. DO NOT GET MARRIED TO THIS FAIR WEATHER WIFE AND FAMILY!!!!
I will give you tactics, but please understand they don’t guarantee success. I have lived and worked in parts of the world where disease, disability or disfigurement in a partner is popularly thought to bring shame upon them, their SO, and their SO’s family. Without knowing more about Fiancée’s parents I can’t guess if you’re at the bottom of a gopher hole or a mineshaft. Now, tactics.
Energetically cultivate the goodwill of members of Fiancée’s family whose opposition is soft to nonexistent. Prioritize those for whom Fiancée’s parents have highest respect, but leave no stone unturned. The parents will shop their opinion around, and when they find less validation for it than they imagined, hopefully they’ll begin to doubt themselves.
If Fiancée’s parents make good on their threat, find an Intermediary, someone they respect, who will exchange news and greetings, and filter out negativity. Time may cause them to miss their daughter, and although their outrage may burn hot for awhile, with no new fuel to keep that fire burning, it may cool. Best wishes.
This is tough.
I would be really cautious.
At the end of the day, if you are with a partner who needs a carer or has a shortened lifespan , you need your support network of friends and family, particularly if she wants kids. If she cuts them off over their behaviour then she could be lonely later on, and if she doesn’t, then they may make your life together hell.
You have many good, happy years ahead of you, could you cope with their behaviour impacting on that?
If she did cut them off, would you worry about her when you’re gone?
Your choice of words is a dead giveaway of manipulative narcissist. You are trying to convince us your relationship was “pure bliss” over and over, while saying “you pressured”, “you gave a month”, “you set up a therapy session for your gf”, “have been nothing but honorable”.
That alone is a good reason to break up with you.
Now… You knew your mother had a genetic condition that you might have inherited. Did you bring it up at the early stages of the relationship? My guess is no. You waited until it was safe to dump it on her.
You love your gf, yet you are ok with her not experiencing motherhood or taking care of you when she’s still young? What if pregnancy does happen and then you’re ok with her experiencing loss of her child? If your relationship was that amazing, she wouldn’t have doubts. Both of you are too young and your relationship is not that serious for that type of commitment. You are asking too much of your girlfriend and what do you have to offer in return? Judging by your post you think you’re a gift from God. but realistically?
You are the only thing she knows since she was in college. She will be attached to you regardless of whether it’s a good relationship or not. She doesn’t completely understand what she’s getting herself into either.
Why are you setting therapy appointments for her, but not both of you as if it’s her problem?
I find it very hard to sympathize with you.
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Look i understand your point of view but i also understand her parents to a point. (although not the ultimatum. Id be there to support my child no matter what frankly)
Few things to think about – Are you two going to have children knowing this can be passed down?
Consider her point of view – you may need full time care and then pass away leaving her at a not too old age and she will have no family to fall back on for support because they fucked off. Thats going to worry someone nsturally even if its unfair
Can you try a mediation session with all of you so everyone can try to talk to each other?
More than that im not sure what to suggest. But i would like to offer my heartfelt concern for you in all of this as well. This cannot have been an easy few months at all and mudt feel not really real yet. I hope youre coping ok and are getting some therapy for yourself too