Relationship and muscular dystrophy
June 10, 2017 1:21 PM   Subscribe

My boyfriend of nine years has a muscle disease, uses a wheelchair, and will need assistance in the future. He is the only guy I've dated. We've both finished graduate education and I'm starting my first job. I'm not sure what to do next.

I love my boyfriend. I think we have something special-- like, finish each other's sentences, sitting in each other's arms and laughing, completely thrilled to wake up next to each other-type happy. I know he loves me no matter what, and I feel the same about him. We've been through some formative years and have very good communication-- I am confident in our ability to talk through almost anything. He's hardworking, smart, kind... I am so lucky that he's in my life.

I'm not so sure about the future, though, and this is why I'm not sure what to do next. I'm afraid that his increasing physical dependence and immobility will change the dynamic closer to one of a caregiving-type relationship. That's not what I want. I'm holding out hope that maybe because the other aspects of our relationship are so good and strong, and because we will be financially stable, that it's not out of the realm of possibility that we could still have a good family life together in the future. I'm not sure if this is unrealistic. His type of muscular dystrophy isn't the most severe around and he has a normal life expectancy; he won't pass it on to potential children because I'm not a carrier, but I think there's a chance it may progress to the point where he will have difficulty lifting cups and washing his hair. I think I would constantly worry about him having a fall. It's hard to imagine children, even though we both want kids.

I've searched far and wide for books and examples of people who have successfully navigated married and family life with a physical disability, but honestly, much of what I have turned up scares me-- people having trouble with getting out of bed, exhausted wives who feel that they have spent their entire lives caring for their husbands in isolation. I visited, and many people there said they wouldn't do it again if given the choice (or knowledge beforehand). Some of the people who spoke more positively seemed out of touch with reality, saying vague pleasantries like "love conquers all," and while I wish that were true, I do think the life I would embark on with my boyfriend is unimaginably challenging, especially if we try to have children together. It's going to take more than just love to make this happen.

When I imagine our future together, I find myself sort of bracing myself, thinking of how we might be able to survive. I'm scared that his limited mobility leaves him susceptible to other medical complications and being bedbound can worsen his progression. And, honestly, sometimes I wonder what it would be like to be in a relationship where I didn't live in constant fear of becoming a full-time caregiver. I wonder if making a clear and amicable break earlier on would be better than trying to forge on and only back down when the relationship has stretched too thin or we've ventured into something over our heads.

So many little things in daily life require mobility, if not strength. I am a petite woman who simply isn't all that strong-- and even if I were, that's because I'm in my twenties. What happens when the muscular dystrophy progresses and we're in our forties, or fifties? What if the physical challenges become so great that they spill over into emotional and mental challenges? We will be financially well-off, but I think that having a home health aide around all the time changes the dynamic a great deal as well.

What do I do next? In my mind, the next possible steps are either (both my ideas) ... to break up, or see what living together is like (we have been long-distance prior to this), to go to couples' therapy together; maybe more actively try to meet real-life families living with mobility impairment so that we can get a better sense of what it is like, if they even exist. We have talked about this openly from time to time, and we've continued with a wait-and-see approach, but sometimes I just get really worried about the future, despite how happy I am in the present.

I'm only getting older and I'm also a little afraid that if I forge on, only to realize five years down the road that it isn't going to work out, I'll find myself newly single in my thirties. This is especially a concern due to my own health issues-- I've been encouraged to try for children earlier rather than later.

Other factors include that he can continue working his well-paying field despite his physical disability. Aging parents are going to become an issue. Research is being done on his type of muscular dystrophy, but at this point I cannot reasonably anticipate any treatments in the near future.
posted by anonymous to Human Relations (25 answers total) 6 users marked this as a favorite
Do you want permission to break up with him?

I think you have a case. Be kind, but break up with him.
posted by zadcat at 2:03 PM on June 10, 2017 [3 favorites]

I come from a family with pretty significant disabilities in a few places. Imagine he didn't have this. Would you be confident about marrying him (or otherwise committing) then? If so, I think that's your answer. We all break down, and the hard stuff comes along unpredictably. Finding someone you love and whose company you continue to enjoy, who's trustworthy and always has your back -- it's a special thing, it's not guaranteed.

But -- that being said -- it sounds like you've been together for 9 years, got together in your late teens, and have always been long-distance.

You should live together (or at least in the same town!) for a while before committing. It'll give you a lot of information you don't have now. First of all, it'll let you see how you really get along when you're in each other's hair all the time. Maybe some of your compatibility comes from not spending enough time together to become really annoyed with each other's worst habits, or to see that your various personal ways of doing things don't mesh, or whatever. (That could be true for any couple, especially getting together young. People change over years, relationships have a million little points of friction, etc - it wouldn't be any condemnation of your relationship if it turned out that you're not meant to be together once you're living in the same place for a while. It's fine to just decide this isn't the relationship for you, even though you've been together for a long time!)

Second, it'll give you a more realistic sense of what the reality is day-to-day. Disability is a major pain in the ass -- no question. It takes ingenuity and determination to keep finding solutions to stuff that most people don't have to worry about. But it's easy for a non-disabled person to blow it out of proportion into a romanticized/ catastrophized Impossible Disaster. Normal people -- not just people of Superhuman Personal Virtues -- have major disabilities and keep on trucking. It's one of those things, it happens. And parts of it suck! No criticism here for looking ahead and wondering/worrying about the future; it could turn out to be really really hard. But it's hard in a human-scale way.

It's hard in a way that you're facing already anyway if you're going to have aging parents and you want to have kids. Caregiving is hard. Money and living close to good family/friends networks make a big difference in making it manageable.

I guess I should also say, this depends on his attitude, his temperament, too. Do you feel like he's looking for someone to be a caregiver or to play mom/handle his stuff for him? Or does he take responsibility for his own problem-solving and independence? If he's been living on his own this whole time, I'd guess the latter. The flip side is, have you taken care of him when he's been sick or whatever? Is he able to accept help when he actually needs it, without being a grouch about it or taking out his frustration on you?
posted by LobsterMitten at 2:06 PM on June 10, 2017 [35 favorites]

It really does sound like you've made the decision that feels best to you and you're asking for permission. This internet stranger gives it to you--it won't make you a monster. If you took out the disability and wrote "I've been with only one partner my entire dating life and these obstacles to the kind of child care responsibility sharing I need to be happy aren't possible to remove, is it OK to break up with my very first boyfriend ever" you're not so outside of a very common human experience in your 20s. Be kind to yourself no matter what you decide.
posted by blue suede stockings at 2:10 PM on June 10, 2017 [18 favorites]

Second LobsterMitten's recommendation that you move in with him. That will give you much more information on which to base your decision.

On the other hand, if you want to break up with him, you are permitted to do that, and you'll probably not regret it much. People are really good at rationalizing their own behavior. There's a scene from some movie where A and B say they love each other, and then A says, "I don't know what I would be doing right now if I hadn't met you," and B replies, "Probably saying that to someone else." And it's true. People are less special than we like to think.
posted by d. z. wang at 2:18 PM on June 10, 2017 [7 favorites]

Have you ever been in a non long distance relationship? Local relationships are completely different and can be difficult tonestablish after long distance. I would be wary of moving in with someone or moving to a location for someone if you've never dated locally. It would be a totally different experience. You have additional reservations which are rational and normal. I'd just dump him and date around for a year or two and then seriously consider settling down. Just so you have that experience.
posted by Kalmya at 2:57 PM on June 10, 2017 [4 favorites]

I think if the options are break up or move in together, you should break up!
posted by masquesoporfavor at 3:03 PM on June 10, 2017 [2 favorites]

Every concern you listed is a theoretical, potential problem in the future. Maybe you should discuss these concerns before assuming they'll definitely come to pass.
posted by so fucking future at 3:33 PM on June 10, 2017 [2 favorites]

Have the two of you ever taken an extended holiday together? If not, I think that is what you should do. Experience what it's like to spend all day, every day, together. And see how you both feel about that. Then talk.

I agree with LobsterMitten that, even though nobody knows what the future holds, old age will eventually, if we live to see the day, make us all disabled in bigger or smaller ways. It may happen sooner or it may happen later but it's what happens. We will all have to learn to live with a body that isn't what it used to be.

Here's some anecdata that may or may not help you.
My partner had a stroke about three years ago. We'd been together for ten years. The situation is very different otherwise: we got together when we were close to 40, and started living together within a couple of months. Anyway, this big and healthy man (who used to be, in my eyes, capable of pretty much anything, and certainly physically strong) turned into a patient in one hour. I did not know whether, and how well, he would recover. And I knew that there was a good chance that he would remain wheelchair bound.
This turned out not to be the case; he can stand and walk, but with a visible limp. There is some residual damage that is not going away. But that's not the point here.
The point is: when he was in hospital, and I had no way of knowing whether he would ever walk again, I felt very certain that I would still want to be with him even if he would not. There was never any doubt in my mind that he was the person I wanted to be with, disabled or not.

You, on the other hand, do have doubts about questions that are pretty similar. And that is totally valid, and it does not make you a bad person. I think you owe it to yourself, and to him, to allow yourself the space to have those doubts, to really let them exist, and to think about them for as long as you need.

I'm not saying that you need to feel as certain as I did, back then. But you need to feel more certain than you're feeling now, one way or another. Take that holiday, make it a long one, and observe. Not just him, but mostly yourself and your reactions to him.

I hope this helps somewhat; I'm afraid I can't comment on the children issue because that's not something that plays a part in my life. Here's wishing you good luck, and peace of mind, whatever you decide.
posted by Too-Ticky at 3:37 PM on June 10, 2017 [15 favorites]

The disabled people I know with muscular dystrophy pay people to do the care taking.
posted by Jesse the K at 3:45 PM on June 10, 2017 [8 favorites]

.. I am so lucky that he's in my life.

I'm not so sure about the future, though,

Honestly, you sound like literally everyone who has had a long term relationship at a young age but just Aren't Feeling It. To my read, it looks like you'd totally be in with this person if the person were right for you--the physical issues seem like a giant distraction.

I could be wrong obvs.; you could just be a super pragmatic person. But it sounds like you're just not that into him. The stuff you describe about being good about him could also be describe a close family member or best friend.

Both of you deserve more than that and it's as okay to break up with a person who is challenged in whatever way as it is to break up with anyone else. Honestly, he deserves the respect, you know? And you deserve to break up with someone simply because you aren't feeling it.
posted by A Terrible Llama at 3:48 PM on June 10, 2017 [13 favorites]

Wait, you've been long distance for nine years? Wow. Why? Are you sure either of you are really serious about the relationship even in the absence of the health issue? I vote for breaking up, I think you would end up extremely resentful given your attitude before anything has even happened. This doesn't make you terrible, it just means you don't feel a certain way about him. If it were a different person, you might react differently. He's apparently not the right one for you.
posted by AFABulous at 3:54 PM on June 10, 2017 [14 favorites]

This is your first relationship, you're in your twenties, and it's been long-distance the entire time? Regardless of his disability, it's normal to feel unsure about this relationship and whether it's worth it to spend more of your time in it.

Your relationship with him is going to be completely different when you're in the same town. Long-term, long-distant relationships often don't last when the realities of the day-to-day don't align with the fantasies that being apart fostered.

It's totally OK to break this off. Have a relationship with someone you can see everyday.
posted by vivzan at 4:01 PM on June 10, 2017 [7 favorites]

I've searched far and wide for books and examples of people who have successfully navigated married and family life with a physical disability...

Human beings complain. For the most part, people whose lives are filled with happiness and contentment don't feel compelled to write books and to share their stories. Misery loves company, etc. It's just a fact that the testimony you'll find will skew negative, because that's who self-selects into offering testimony.

I think we have something special-- like, finish each other's sentences, sitting in each other's arms and laughing, completely thrilled to wake up next to each other-type happy. I know he loves me no matter what, and I feel the same about him.

That's wonderful and rare. As long as you're doing all this research about disabilities, do some more generalized research about people's experiences with dating and relationships. It's damn hard to find "something special."

I'm only getting older...

Yeah, everybody has those fears. They aren't unique to you, and they have nothing to do with your boyfriend's health. They might take a specific form due to your boyfriend's health, or what some doctor told you, etc, but that's very different from the fears themselves being some kind of unique experience. They're not.

If you want to break up with your boyfriend, hey, it's your life to live: we all take risks, we all make decisions we aren't sure about, and sometimes we're happy and other times we regret them. Of course you have permission. But since you're literally asking an open-ended question about "what to do next," I'll chime in with my two cents: (1) the concerns you've described aren't unique; and (2) you've posed this somewhat loaded question into a forum notorious for being filled with people who enjoy encouraging strangers to abandon meaningful relationships ("DTMFA!!") based on a few paragraphs of text. I'd think long and hard before paying a modicum of mind to the answers you get (including mine).

I'm sorry for the anxiety and worry that you're feeling. I hope that whatever decision you make, you end up happy with. Good luck.
posted by cribcage at 4:33 PM on June 10, 2017 [5 favorites]

I don't think you can possibly make a decision about this without having at least lived in the same town. Nine years of long distance, even with visits, is not nine years of seeing each other at your own homes several times a week. I don't think living together is the end all be all, but you are honestly missing out on a huge part of a relationship if the only times you're together feel like holidays because they're so infrequent.

And I think that if the caregiving dynamic is not one either of you want, you can work to avoid it. Honestly, everyone is a second away from disability; in this case, at least, you have a better idea what you're going into than plenty of others.
posted by fiercecupcake at 5:08 PM on June 10, 2017 [2 favorites]

As a disabled person: you mentioned trying to talk to other disabled people/couples, and that is an excellent idea. Talk to him, especially about what his plans are for having an aid or caregiver. Talk to couples where both people are disabled, even.

I do think it seems like you want to break up with him for other reasons, which people have given you good advice about already and which is 10000% fine, but it's worth getting information about being in a relationship with someone disabled from a variety of sources and not only "well" spouses. The idea that loving someone with a disability is universally impossible burden to bear just isn't true, but it's a persistent belief. It's totally possible and in fact likely that you will at some point love another person with a disability, just based on the sheer number of us around.
posted by colorblock sock at 5:20 PM on June 10, 2017 [12 favorites]

I join others who are less concerned about the muscular dystrophy than with the 9 years of long distance bit. It's often better to figure out the local stuff first and foremost, then figure out the other stuff.
posted by corb at 5:23 PM on June 10, 2017 [10 favorites]

9 years of long distance with your highschool/college boyfriend says more to me about the prognosis of your relationship than MS.

On disability as a stressor in relationships, I will say this: There are a lot of different kinds of strength needed to make a family with children healthy and functional. One of my closest friends has a severe mobility impairment and is a power chair user, and is also the most emotionally strong person in her family; the one who sets reasonable boundaries for the kids and teaches them study habits, the emotional rock and caretaker and balance for other less stable adults. She's the one doing most of the heavy lifting in all but the literal sense, and it's clear to everyone who knows them that the entire family would pretty much implode without her. Your boyfriend may eventually have too much muscle weakness to be able to perform some or even most physical tasks. But if he's a grownup in the ways that matter, that's not going to be the caretaker catastrophe you're worried about. In a life partnership with children, being able to keep a cool and compassionate head in a crisis is really and truly a lot more important than being able to independently wash your hair.
posted by moonlight on vermont at 6:27 PM on June 10, 2017 [7 favorites]

My late husband had a serious disability. I loved him and don't regret what we had but would not willingly go into something like that again. It wasn't even the day-to-day stuff; the medication he was on had side effects which affected his energy levels, his mood and so on. I didn't really understand it until pregnancy hormones messed with my mind and I had some inkling of what that felt like. And it could be scary! He was prone to dehydration when he wasn't feeling well. That equaled ER trips. And once the baby came along, I felt terrible guilt over having to choose between staying home with my son or going in with my sick husband.

That said; life is a wildcard, you know? You could get hit by a bus tomorrow. So could he. People with my husband's condition are statistically more prone to cancer (which I actually hadn't known until his final illness). But, irony---he managed to get a kind of cancer that's not the kind these people are prone to. And they never even got around to treating it because he went to the ER with a lung infection which was ultimately the bigger issue for him. I say this not as a fear-monger but solely as a single point of anecdata. I had prepared myself for all sorts of consequences of his health condition. And in the end, the unhappy outcome came down to sheer, dumb luck and wasn't even related to that.
posted by ficbot at 7:40 PM on June 10, 2017 [6 favorites]

So if you stay with him, don't become the sole caregiver. Some ideas:

If you both will have decent or better careers for a long time, then live as if you only had one and save one whole salary to pay live-in caregivers in the future.
Provide room and board for younger people who help with tasks in exchange.
Live with another family with some sort of complimentary disability (physically strong but mentally weak?).
Live with extended family.
End up in some sort of long-term polyamorous relationship.

The nuclear family living in the suburbs will not be a good life for you, but it's not the only way to live.
posted by flimflam at 9:51 PM on June 10, 2017 [2 favorites]

It sounds like you haven't spoken to him about his vision for your relationship and for managing his health needs in the future. I think that's step one, way before moving in together or breaking up (or assuming you'll either be a miserable caretaker or single and childless forever as though those are inevitable.) Maybe he'd expect a romantic partner to be his caretaker, or maybe he's operating on the assumption he'd have full or part time help. Finding out what he plans to do should happen long before you're making permanent decisions here.

And I agree that long distance is kind of a red flag at this point. What's stopping y'all from going for it for real and finding out if this is what you want for the long haul? Or do you already know?
posted by kapers at 5:46 AM on June 11, 2017

Lots of good things said already. If I were you, I'd go into individual therapy for a bit to explore my feelings about being with someone who has challenges like your boyfriend's. My father had significant physical disabilities and so did my aunt (my mother's brother's wife). My aunt once said, "I wonder what is was about your mother and her brother, that they both married people with disabilities." That comment blew me away, because I'd never thought of disability as a big factor in our family and certainly never considered that they were actively drawn to that aspect of the relationship. But my aunt thought her husband was, and maybe my mother was too? Not necessarily in the obvious ways, like that some people enjoy being caretakers, although that could be part of it as well. But were they-- I'm guessing here-- trying to teach themselves something by being with people who'd grappled with physical limitations, or even mortality, at an early age? I think so, possibly, and I think this is not necessarily a negative thing. But in the interest of the relationship, it might be something to unpack-- whether the relationship is just for now, or whether you are going to live together.

But yeah, anyone posting, "I've been dating the same person for nine years, and I'm only in my 20s," will get suggestions that they break up, if only because you would quite likely choose differently at this age. And also, I don't get much of a sense of your boyfriend's priorities, if only because you are quite properly speaking for yourself and of your own concerns. Even if you have had several big talks, though, you haven't tried living together.
posted by BibiRose at 5:55 AM on June 11, 2017

There's a great documentary, Gleason, about a pro football player with ALS. The documentary shows several relationships, but the one with his wife affected me deeply.
posted by JacksonandFinch at 7:56 AM on June 11, 2017

I want to pick up on something LobsterMittens said, and offer one or two things from my own experience:

It's hard in a way that you're facing already anyway if you're going to have aging parents and you want to have kids. Caregiving is hard. Money and living close to good family/friends networks make a big difference in making it manageable.

A thousand times this. I can imagine various ways my childhood could have been less damaging, and most of them involve my parents not isolating themselves (intentionally and not, respectively) from the rest of their family networks of support. In contrast to what happened, the isolating parent had the option of remaining around her family network, but it meant she would have become a caregiver to her father. However. This would have been an order of magnitude healthier than the existing outcome, both for her and for her children, namely me and my brother.

Anyway, that's not to say that you want to isolate yourself, but that there's usually a tradeoff to make in terms of staying around family, which I think is better for kids, versus going somewhere else, which means you might be relieved of caregiving responsibilities toward your parents. So I think LM is correct on both points: you might want to consider what family/friend networks of support you'll have in various scenarios, and also be aware you might end up caregiving anyway, even if it's not your husband you're caring for. And based on the current economic and medical trends, IMO, most people going into their 30s now are going to deal with caring for elderly parents at some point. (I debated not mentioning this whole bit, because it's mildly narcissistic to talk about myself, but there's enough valid, impersonal wisdom here in the thread already.)

Another personal analogue which may or may not be useful: I have a long-term friend I get along fantastically with, both in person and (mainly) via long distance. We've never dated, but we have a similar dynamic to what you described: we finish each other's sentences, can talk for endless hours, and (I imagine) would end up laughing in each other's arms if we lived in the same place. Despite that, I'm not in love with her, and in the context of her being a potential partner I have a serious concern about her attitude to her own disability: she sees it as a core part of her identity. That irks me a bit. I deal with quite bad clinical anxiety, but I see it as something to overcome, not something that's a core part of iffthen. I'm aware that physical and mental disability can be very different beasts, but I reckon you should consider what your SO's attitude to his own disability is - and what your attitude is to disability in general, and how those two interact.

Something I don't think has been mentioned yet: how much is caring for others a part of your identity? I one sense, you could have been attracted to anyone, but you've been with someone with a disability for a long time. There's nothing wrong with caring (including making accommodation for other people's issues/disabilities) being part of how you do relationships, including romantic ones. But it doesn't *have* to be part of how you do relationships, all the time - and it doesn't have to be part of the relationship with your life partner. Also, life partners/marriage is one area where not only do you have complete agency, and inherent and social licence for being as picky as you want, it's one area where you really should exercise that selectiveness, agency and caution to the fullest extent. I don't think anyone here on Metafilter (and there's some really awesome, smart, empathetic people here) would recommend you martyr yourself, i.e. accept more caregiving than you're ok with in every sense.

I also want to Nth a point made repeatedly: why haven't you lived together yet, after nine whole years? In a similar situation I'd maybe do some self-examining about whether I'm unconsciously delaying, and (if so) why I'm doing that. If there's religious/socially conservative family pressure for not living together, and you decide to give it a go (and I think you should), my own response to puritanical relatives would be something like "we're going to live together for a bit to make sure disability won't be an issue in our future relationship. We're not going to have sex, we're dealing with a hurdle many couples don't have to face." Whether the no-sex part is true is somewhat irrelevant, I think: either relatives will be more or less ok with that, or they won't be, which means they care more about your sex life than that you have a happy, successful marriage, and they will have revealed their own hypocrisy.

Finally, some friends of my parents enjoyed for years a very happy, healthy, successful marriage, until the husband was hit by a train while walking the dog. He became a quadriplegic and his wife became, essentially, a full-time carer for three years until he passed. Humans still live day-to-day, with no guarantees, despite how much we pretend otherwise.
posted by iffthen at 7:55 PM on June 11, 2017

Nobody said it was easy; no one ever said it would be this hard. No offense to my loving family, if they should ever read this, but I'm pretty sure I would break up with my fiancee if I knew the quality of depressed life that was in store for the next fifteen years and counting. Our boys are great, though. People here are saying there are no guarantees about anyone else you might be with, sure, fine, but at least you have a chance.
posted by turkeybrain at 7:34 AM on June 12, 2017

What does he want for his future for himself? Ask him what kinds of plans he would consider for if/when he gets sicker. Does he live on his own now? Does he live with roommates or family, and how much does he rely on them? Does he have a paid caregiver helping him out? If you started a conversation with him about what his future health and care needs might look like, would his immediate assumption be that you'd be his primary caretaker, or that you would be the working professional you've trained to be and that he (you as a couple) would hire a caretaker? Or has he not admitted to you/himself that he will need a caretaker in the future? Talk with him about how he'd manage if you weren't around, and what difference it makes in his planning if you were, and consider whether you like what you hear. It is a really really hard thing to be 100% necessary in a relationship, whether that's for a partner's physical, financial, legal/immigration or psychological/emotional dependency - you can feel very much trapped. That's part of having a strong relationship, is knowing what each other are scared of. You need to talk about this with him. I'm sure you have already, but talk some more, you can never talk too much when there's something this big.
posted by aimedwander at 8:43 AM on June 12, 2017

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