Marriage, without "in sickness"?
July 7, 2019 10:53 PM   Subscribe

As someone for whom marriage is a future goal, I am looking for ethical advice about what happens when a marriage encounters really serious health problems.

I'm a fairly young person who is in a long-term, committed relationship where marriage is planned for the future. I feel really enthusiastic about the increased intimacy, security, and commitment that marriage can bring, for those who view it that way.

Recently, just sort of by accident, I did a bunch of reading about people who have developed major health issues or been involved in terrible accidents, and how this has impacted their spouses. I've read so much about people whose spouses are no longer there as they knew them, who require so much care that it derails their romantic and sexual relationship, who have become unpleasant or constantly angry, and so on. Many of these people - writing on internet forums or advice columns - are desperate to leave their dead marriages, but feel consumed with guilt for even thinking of doing so.

The possibility of being in this situation one day is absolutely terrifying to me. A trying but ultimately temporary health crisis is one thing, however terrible it may be, and seems surmountable to me. Even more lasting or permanent health problems or limitations could be overcome, I feel like, as long as both spouses were still capable of maintaining a romantic and sexual relationship, in whatever form that takes. What keeps me up at night is scenarios where health issues permanently end the romantic and sexual elements of the relationship. This would be no fault of the ill partner of course, but on the part of the other spouse, it seems like it would be total, unmitigated hell. I imagine the kind of relationship I have now with my partner withering away into only a kind of "warm, familial, like-a-sibling" kind of love, and it makes my stomach turn and my chest tighten. It totally repulses me.

A big part of me - or at least a very internally-loud part of me - feels like the better option in that case would be divorce. Not even for the non-ill partner to find a new person, since I doubt I would have the heart for that, but just because grieving in solitude seems preferable to watching the marriage you had and loved die away like that. Maybe there are some situations where someone's health renders them simply incapable of carrying on that kind of relationship anymore.

I'm aware that there's a gendered aspect to this as well, given that men are staggeringly more likely to leave their sick wives than vice versa. I'm sure in many of those cases the non-ill partner could have done more to make the marriage work, and simply acted deplorably. But I also can't help but think that in other cases maybe it's because women are more conditioned to feel an obligation to hang on, an obligation that they shouldn't or don't need to have.

Basically, what I want to ask people is: do many people think this way? Is this acceptable, or is it really horrible and morally beyond the pale? Are there people out there who have actually structured their marriages like this, where there is a mutual understanding that the irretrievable loss of the romantic and sexual relationship would be grounds for ending the marriage, even when poor health is the cause? Are there people out there who have left their marriage in this kind of scenario, and do you feel you made the right decision? Is the only moral option for someone who thinks this way to give up on the idea of marriage altogether?
posted by anonymous to Human Relations (60 answers total) 21 users marked this as a favorite

I imagine the kind of relationship I have now with my partner withering away into only a kind of "warm, familial, like-a-sibling" kind of love, and it makes my stomach turn and my chest tighten. It totally repulses me.

I don’t really have any experience or advice regarding the health problem aspect, but this stuck out to me because many relationships or marriages become like this even without one partner becoming incapacitated. I do think your strong visceral reaction to the change in relationship qualities is unusual. Presumably, a warm, familial relationship would still be a positive thing in your life? What exactly is it that makes it sound like ‘total, unmitigated hell’? Those are very strong words for what, in my experience, describes many, many long-term relationships. It seems worth digging here and not just focusing on the (maybe more dramatic) health problem issue.

My 2ct: relationships (all of them) change. You stick it out until you feel you have given what you can give. If there’s something you really can’t give, you find a way out. Only you know what you can and can’t give, and I don’t think you know in advance.
posted by The Toad at 11:15 PM on July 7, 2019 [62 favorites]

It sounds like "romantic and sexual" is a package deal for you? There can be romantic relationships that are non-sexual, and sexual relationships that are non-romantic. Many relationships are exclusive both romantically and sexually, but there are also relationships that are romantically exclusive but not sexually exclusive, and relationships that are sexually exclusive but not romantically exclusive, and relationships that are both romantic and sexual but not in any way exclusive. In the event of a calamity, one of those situations might be an option for you, if your partner is OK with it and you can separate the two. I do not personally think I could handle such a thing but I know of many people that do so and are quite happy.

Based on my personal interpretation of what a marriage should be, if you think the relationship would be effectively over if the sex stops, then I would say you should not get married; we all get old, our bodies fall apart, and if you stay married long enough, it's likely that the sex eventually will stop, even in the absence of a particular calamity. Really, though, what a marriage is and what is acceptable within it and when it is acceptable to end it is a matter of what you and your partner mutually consent to - if you're both going into it with the agreement that the end of sex would be the end of the marriage, then it's really nobody else's business and whether or not they find that morally reprehensible is irrelevant. Your relationship and your marriage (or choice to remain in a long-term committed relationship without getting married) is yours and your partner's to make whatever of it that you will.
posted by jordemort at 11:21 PM on July 7, 2019 [25 favorites]

Marriage is a package deal, that's why it's right there in the things you have to say. That being said if one partner gets very sick and the other partner divorces them it might be better for the sick partner to be rid of someone who doesn't care for them and treats them badly, as long as they are provided for financially. But things not always going right is just life. Think about if you were the one who was sick and unable to function. How would you like to be treated? That's how you should treat others. Also, if you think you'd divorce your partner if they got sick, you should not have kids.
posted by bleep at 11:44 PM on July 7, 2019 [40 favorites]

Marriage is not a promise to be sexually available to the other person. Marriage is the joining of two people or two households into one. It's a financial, social and familial commitment to another person. In today's society there are expectations and norms around that commitment that you are not onboard with. Those expectations and norms would be around financial and emotional support for those legally considered your closest kin.

So no, I don't think you should get married or if you do only with the explicit understanding of both parties that this is how you feel. There is nothing wrong with not wanting that level of commitment to another person but that is the expectation with marriage in society today. Many, many people get married pretty much solely for that kind of commitment from another human.

Discreet affairs are pretty much socially acceptable for spouses in that situation. Walking out the door and taking half of everything and your health insurance with you is not.

I do think you should reflect honestly on what level of commitment and support your expect from a partner after an accident or diagnosis of a serious illness and be prepared to offer at least that. Also what would you do if you had a disabled child? One of your parents needed go move in for convalescence or more permanently? If you became disabled yourself?
posted by fshgrl at 11:47 PM on July 7, 2019 [58 favorites]

I agree with the others that your stance isn't really morally wrong, I guess, if your partner agrees to it before the marriage.

For me, the way you frame this seems off. You say that the prospect of having a familial love with your spouse repulses you. That's pretty strong. I mean, none of us want that, but for most people it isn't exactly's something we work on/something we try to prevent /a bridge we will cross when or if we come to it.

The idea that I will be there for my husband in sickness and in health, and he will be there for me, is one of the best parts of being married for me. I love knowing that there will always be someone there for me, on my team, no matter what. He is my family - the reason I got married is because I wanted to declare that we are family - and I will take care of him just as I will take care of my mother or sister if they ever need i t. I hope he would do the same for me, he says he would if the time came. I love that he is my next of kin because I trust any decisions he may have to make for me in that capacity. Of course this is probably the idealised view of marriage and you can probably tell we haven't been married long, but ...if you don't go into it with that attitude, if you don't believe in it at the beginning, part of me wonders what the point of taking that extra step is? Why get married at all?
posted by thereader at 11:49 PM on July 7, 2019 [28 favorites]

The possibility of being in this situation one day is absolutely terrifying to me. [...] What keeps me up at night [...] it makes my stomach turn and my chest tighten. It totally repulses me.

You are trying to make an anxiety problem into an ethical problem. This is not actually an ethical question that you have. Ethics don't keep people up at night or make them nauseous. You don't need an ethical answer to this... but more than that, an ethical answer is not going to make you actually feel any better. You need to do something about the level of anxiety you have about bad things happening in your future relationship and how those changes might impact you and your partner. Preferably in a mode that includes a) your partner and b) an actual mental health professional.

Not that you shouldn't think about this stuff, but before you decide that this current gut-churning terror is a permanent state on which you should base all your decisions, you really should take a solid crack at dealing with it on its own. My anxiety has told me a lot of things over the years were situations that I absolutely could not survive, and it's usually been wrong. You might still decide that "monogamy forever no matter what" isn't what you want, but you need to approach that from the most rational place that you can, or you're just reacting to the anxiety, not planning for your future.

Also stop reading these accounts for awhile, at least until you can talk to a professional. If you find yourself "accidentally" doing extensive reading about a thing you actually find really upsetting, that's a good sign by itself that you're in a bad place and you need to step back and take better care of yourself.
posted by Sequence at 11:51 PM on July 7, 2019 [170 favorites]

Writing as one who watched her husband slowly die over almost a year, I can't imagine leaving a loved one who needs support and care.
posted by Cranberry at 1:17 AM on July 8, 2019 [98 favorites]

I feel really enthusiastic about the increased intimacy, security, and commitment that marriage can bring, for those who view it that way.

Do you and your partner view it that way? That’s what really matters.

I’m one of those people who felt suddenly different after marrying my long-term, committed partner (and I’m from a culture where couples don’t usually get married!). The fact that we had made a lifelong commitment brought on that intimacy and security.

I can’t imagine those feelings as separate; to me, they are entangled. During my spouse’s years-long, life-threatening, life-changing depression, that commitment kept us strong and (I believe) kept them alive. Now that the fog is dissipating I am finding my loved one again. I’m glad I stayed.

Something changes when a spouse gets ill — the illness doesn’t just happen to them, it happens to you, both of you.

Have you reflected on what commitment and security mean to you? When I got married in my mid-twenties I couldn’t have articulated it well, and it might be the same for you (I don’t know your age, and we are all different). I encourage you to share some discussions on the topic with your partner before you make any further progress towards marriage, and consider taking a pre-marriage course or counselling sessions. They are not for people with “issues”, they are a place to work out exactly this kind of feeling.
posted by third word on a random page at 1:40 AM on July 8, 2019 [11 favorites]

I'm on board with most of what Sequence said.

Also keep in mind, you're reading a very small segment from people involved in the disabled/chronic illness community. You weren't on the forums talking about the beautiful ways in which relationships adapted to changes. You'll find about a million-fold of those types of threads for when people have kids - does having kids give you the same anxiety?

I think this IS a thing to think about, just like religion, money, kids, chores, careers, money, etc. Because you would want you and your partner to be on the same page. Although people have no idea how they will react on either side of this until it happens and it's constantly going through stages. HOWEVER I think this should only be discussed with your partner after you REALLY flush out your own feelings and anxieties on this.

That said, I'm disabled. It is most likely permanent. I'm unable to work. My life and marriage have changed dramatically (although there is less on-going very personal caretaking, he still has to do a lot for us.)

No matter what, one or both of you will get sick, at some point, possibly for a long time. That is reality. You will likely be disabled at some point in your life, even if it's due to age.

And, it's scary to think about! But a big part of this is realizing, at some point, some level of illness or impairment is inevitable. Now, you just have to figure out how much you can commit to, and be honest with yourself and your partner. It's unfair to expect it from someone else if you would be unable to provide the same thing.

Being sick myself, I don't even want to deal with it - and it's MY body. I totally understand how much pressure is on my spouse. But there's lots of space between "I can't handle this on my own as a spouse" and "I can't have this person as my spouse in their condition." For example there are other caregivers, counsellors, medication, etc.

In my opinion, a marriage is a deep long term relationship where you have the other person's back. You constantly have to adapt and compromise. Singing a marriage document does not automatically equal security and commitment. Those things require work from both partners.

My husband literally pulled a tube out of my abdomen. He held my hand while I had a panic attack sitting on the toilet in pain following a major surgery. And he still finds me sexy. (And honestly the tube one is a favorite story because we find it hilarious!) So, at what point do you think you would no longer have your partner as a romantic partner? Even lack of sex doesn't mean that you only see them as a sibling. There are many types of romance and sex. And sure, if that isn't working for you, you have to figure out what is the best path for everyone. But that could happen in ANY relationship, regardless of health.

We couldn't have predicted all this stuff when we got married. But I know he will be there for me as long as we are both working toward that goal. We're a team.
posted by Crystalinne at 3:08 AM on July 8, 2019 [35 favorites]

You say you are quite young. This may be informing some of your feelings around this. I am single by choice and can't comment on the relationship side. But my relationship to myself, to my body, has changed significantly over the years. I have a long term chronic illness. It constrains every aspect of my life. If I had been struck with this in my early 20's I don't know how I would have coped. When I was young, energy was everything. I ran around meeting friends constantly, dancing til dawn, studying, working two jobs, etc. I couldn't bear not to be on the go and everyone else was too.

The onset of my illness coincided with a time when everyone else was pretty tired too, though theirs was with work and kids. Basically, what I'm saying is what you want out of a relationship will probably change over the years too. A warm familial love may well give you the joy that staying home watching Netflix with the cats does for me. Meanwhile the ghost of young me shakes her head in horror and races out to go dancing after a nine hour shift on my feet. There's a good chance future you will wonder why you were being so intense about this. I doesn't matter. You want what you want now. Future you can deal with what comes.
posted by kitten magic at 3:14 AM on July 8, 2019 [7 favorites]

I'm not married but I've had anxiety and just want to reiterate what Sequence said. If you're fixating repeatedly to this extent on something so specific, you need to treat your anxiety rather than alter your life choices to try and elminate the anxiety (by eg. not getting married).

Your thought patterns are typical of the rumination and catastrophising that come with anxiety. Not that expecting one of you will need to care for the other is catastrophising: Judging by the comments here it's pretty likely. But feeling with certainty that such an occurrence will completely ruin your life forever to an unbearable extent, is.
posted by penguin pie at 4:00 AM on July 8, 2019 [3 favorites]

Marriage is fundamentally a contract with the state. It's a legal agreement governing assets, estates, dissolution and division of property. After that, it's whatever two parties agree it will be. You don't have to promise for richer or for poorer, and you don't have to promise in sickness and in health.

Having said that, it's a commitment, and I think you'd be very hard pressed to find a partner who was okay with you bailing when the going got tough. Can you honestly look at the partner you're contemplating a lifetime with and see yourself just... leaving if your partner became ill? Plus, what if you have kids? Mommy has cancer so daddy took the kids and split? Daddy has MS so mom grabbed the kids and bailed?

To be honest, I suspect this is more about displaced anxiety over the prospect of aging or about the seriousness of a lifelong commitment than it is about the actual question.
posted by DarlingBri at 4:20 AM on July 8, 2019 [16 favorites]

I've spent a fair amount of time on forums for partners of people with a particular chronic and potentially severely disabling illness, and what I've seen is that what you will see there is usually the worst of the worst. The people who are hurting badly enough to be reaching out for that kind of support are the ones who are having their worst days, their partners at their most acutely ill, the consequences extremely severe. And that pain is absolutely real and valid and deserves that support. But - and I've mostly backed away from those forums as a source for support for myself for this reason - they are not the whole picture or the only picture.

The people who are doing okay or even doing great - they're often not on the support forums. They're out in the world living their life with their disabled partner, the bad days and the really good ones. They have rich and varied support systems that may include the forums but also probably include friends and family and social media support groups and offline support groups and hobby groups and pets and their partner too. They're not writing the books because no one wants to buy up the story of "my partner has a disabling illness, it sucks and we both fucked up some in learning to deal with it, but things are pretty good now, want to hear about the board game night we run?" You can sell that as an Inspiring Tale Of Overcoming Whatever but that's treading real close to some "using your partner as disability inspiration porn" territory that's gross. Plus, well, a lot of us who've been through this are aware that the bad times are going to come back at some point, so a) we don't want to sugarcoat things too much and b) we're busy shoring up our relationship and our support and our good memories now against the bad patches down the road.

All of which is not to say that you, personally, need to sign up for "in sickness" if that's not what you're down for. Just to suggest that you take a step back from reading whatever you're reading for a while, and realize that it's not a full and accurate picture of what "in sickness" is likely to look like. You get to need the things you need out of a long-term relationship, and if that's "we both keep our early-twenties libido forever and get no chronic severely disabling illnesses that fundamentally change the nature of our relationship," I think you're not super likely to get that, but who knows, some people do, and maybe if your partner is of a similar mindset you'll prioritize the same things and get lucky in the same ways and it'll work out for you. I hope so! I don't think you're a horrible person for wanting what you want. I do think you should having some serious discussions with your partner before marriage about how you're feeling and how you would deal with things if one of you does get seriously ill or injured. Your thoughts aren't awful but they are far enough out of step with the norm that it would be wise, kind, and ethical to make sure you're on the same page before the wedding.
posted by Stacey at 4:49 AM on July 8, 2019 [22 favorites]

I think your perspective is not uncommon, but it’s different enough from the culturally dominant view of commitment that potential spouses will probably not expect it.

Ethically speaking, your responsibility is to fully and unambiguously disclose this to anyone you choose to be romantically involved with, the earlier the better. Including your current partner if you haven’t already.

Practically speaking, expect this to be a dealbreaker for most.

I mean, dude, given the choice between cleaning up an incapacitated person’s effluvia and having hot naked fun with a healthy person who thinks you’re great, most people prefer having fun. You’re not wrong for that preference. But in terms of commitment, most people would rather have a partner who’s willing to do the hard stuff than a partner who might leave at the first thing that isn’t fun.
posted by Metroid Baby at 5:09 AM on July 8, 2019 [8 favorites]

We all get sick and die. We are busy dying right now as we are living. As you get older this gets more difficult to push away from your mind. Your parents and their friends start dying, then your friends at an increasing pace. At some point life will not seem to you like an endless horizon reaching into the future, but a timed exam where you don’t know exactly when the proctor will say “pencils down.”

And the only way to pass is to keep going until then. There’s no time outs.

You will also gradually come to understand “love” very differently too, as you move through relationships and heartbreaks and joys and maybe have kids and watch them struggle to live fully as well. They’re whatever immortality you have, plus whatever other work you do and love you share. Sex and romance are important but not exhaustive or exclusive aspects of love. Care, shared history, commitment, and forgiveness are all critical parts of love as you age. Eventually they come to overshadow youthful motivations and desires and understandings.

Without going into detail I’m on the other side of the mountain you are afraid to climb. I never even thought about what this would be like when I was younger, and until you’re there you don’t have any real idea. It’s an abstract commitment until it’s concrete as hell. And then you will find out so much about yourself and about love.

It’s really hard and scary and it’s the most meaningful and fulfilling thing in the world to be fully present for the hard parts, when you really start to appreciate the remaining days or months or years and you come within sight of the end. We all face the hard parts. It’s just a matter of when. It’s human nature not to confront this reality until you have to (and hope your statistical odds line up with reality, and you actually have many years left and your death isn’t sudden and unexpected with so much left unsaid and undone — a retroactive fear that arrives with the aches and pains of aging). But it helps to be aware that you will, eventually, get sick and die. Alone or not. Loved or not. Loving or not. Remembered as a good person or not. Happy or not.
posted by spitbull at 5:15 AM on July 8, 2019 [47 favorites]

Sickness goes both ways, it is just as likely that you will need support as your spouse.
posted by nickggully at 5:30 AM on July 8, 2019 [4 favorites]

I would be grateful to be the person my love wants nearby as they take that last journey. I am not young (51), and I have learned that some truly painful experiences can be most treasured. Perhaps you will feel that way one day, perhaps not. I have found that crises and difficulties bind me, or make me bond, more strongly than any purely happy event. I am grateful to help my friends move, for example. It's a shitty job, even if there is pizza & beer at the end, which there mostly isn't, it's aware altruism, but more important because you love them and they love you. You give them what nobody else can or will. Death & chronic illness aside, raising kids is hard. Even with all the advice, sometimes you (or your partner) will be a crap parent. The compassion, understanding, kindness and love evoked by these events are, to me, worth more than all the fun times.

It's okay if you're not like me, it's (more than) okay if you let potential partners know that you aren't available for that sort of commitment. But have you had a pet that wasn't well, that you loved enough to sacrifice time and money for their wellbeing? Have you chosen to be there whike they were euthanised so they didn't feel alone? I think I use the wrong word when I say it is an honour to do such things, to be called upon and choose to accept the pain. I think, strangely (I must be getting old) that it is a gift to be needed like that, a gift to have the opportunity to sacrifice pain in yourself, to give someone an easier death or illness.

Certainly, this does not apply to drama queens or narcissists, who are emotional vampires, and drain you. But a loved one dying - to be there, holding their hand through the horror of the death-breathing, just because you think, somewhere deep down, they can feel your love. That is a gift, that is knowing someone and loving someone so deeply, that you willingly take on the pain of their loss.

I suspect that you are a deeply emotional person because this scares you. Please ask yourself whether it is their pain, or your own, you can't face. Ask yourself if it is a gift you wish you were strong enough to give, because if you wish for this, you already have the capacity to suffer for your love.

If you don't, that's okay, and I commend you for checking in with this community, but again, I find myself telling you, that some of my most treasured memories are of people dying that I was there for, or people who were sick that I gave comfort to.

I wish our world recognised the value of giving as much as it does receiving.
posted by b33j at 5:38 AM on July 8, 2019 [20 favorites]

By the way, my first date with my current partner was him taking me to the hospital, and to my surprise, waiting for me to be released - I thought it was drive and dump. He also cared for his mother and his last partner through their chronic illnesses and death, and I am certain, should my time come first, he would dothe same for me, though (It's weird to say), I hope he goes first, so that I can give him the love and care he gave to others. He's 9 years older, so given stats I'll live longer, and while I hope, now that I've found him, he has an extraordinarily long life, I want to be the person who gives him comfort at the end. But in your 50s & 60s, you're mad if you don't think about and discuss end of life options.
posted by b33j at 5:49 AM on July 8, 2019 [8 favorites]

divorce...Not even for the non-ill partner to find a new person, since I doubt I
would have the heart for that

This caught my eye. People do leave their spouses, but it's a bit dramatic to imagine that they then...what? remain celibate for the rest of their lives?

As others have mentioned, it's very common for people to find other people even while remaining with their ill spouses.

This more than anything else gives me hope that you are not thinking realistically about this situation.

So, by all means, please confess do your doubts to your partner before you get married, but I am also optimistic that when the time comes (and it will, for one of you) you will rise to the occasion.
posted by meaty shoe puppet at 6:04 AM on July 8, 2019 [2 favorites]

Having said that, it's a commitment, and I think you'd be very hard pressed to find a partner who was okay with you bailing when the going got tough. Can you honestly look at the partner you're contemplating a lifetime with and see yourself just... leaving if your partner became ill? Plus, what if you have kids? Mommy has cancer so daddy took the kids and split? Daddy has MS so mom grabbed the kids and bailed?

To be honest, I suspect this is more about displaced anxiety over the prospect of aging or about the seriousness of a lifelong commitment than it is about the actual question.

Wish I could favorite this multiple times.

DarlingBri is spot on...Marriage is a commitment you make to another human to be with them, as the vows say, in sickness and in health. It's easily the most important promise you will ever make to another person. And, yes, that could well mean putting a large piece of yourself on-hold while you tend to the needs of the other.

One of you will be sick to some degree over the course of your partnership. Maybe a minor illness. Perhaps terminal cancer. It doesn't matter. You promised to be with them, and support them, to the end. The particulars within that agreement, of course, are entirely up to the two of you.

No one is ever ready for that level of commitment. Not at first, anyway. Largely because we're young and cannot fathom such ordeals and complexity. We say we marry for love, but that's almost always a young person's definition of love. All soft-focus hearts and rainbows and fun. The actual love comes when the other person seriously needs you and you jump in without a second thought. When you live up to that promise you made. You might not be strong, and you might falter, but you kept your word and did all you could to live up to the promise. And, that's all anyone can expect. No one expects you to be a hero.
posted by Thorzdad at 6:32 AM on July 8, 2019 [16 favorites]

The traditional wedding vows also include the phrase "until death do we part", and yet somewhere between 40 and 50 percent of marriages end in divorce. The vows are an aspirational but recognizably unrealistic goal for a lot of people.

Being realistic about your feelings around losing the person while keeping the body is a good first step, but that is a relatively low probability event compared to all of the other situations that may tear you apart. If you’re going to rewrite the vows to be something that you personally are able to honor, don’t stop with just this part.
posted by Tell Me No Lies at 6:52 AM on July 8, 2019 [1 favorite]

I just want to counter some of the stuff that you're reading, which is pretty intense.

Letter writer asks Dear Prudence if she can take a lover because her husband has a traumatic brain injury. She responds with a story about Page Melton, whose second husband made sure her first husband (who's ill) was taken care of.

Emily Yoffe has her own story about being married to a widower who took care of his first wife until her death.

Amy Krouse Rosenthal wrote "You may want to marry my husband" 10 days before she died of cancer. He followed up with his own piece a year later.

On a practical note, in the many conversations that you're having with your partner about marriage, also talk to them about getting life insurance and critical illness insurance.
posted by foxjacket at 6:52 AM on July 8, 2019 [12 favorites]

I have a family member who cared for their spouse for 20+ years of a devastating disease (MS) and they told me once that they did couples counseling for people who had recently received a similar diagnosis, and that they could often tell which couples weren't going to make it through. My family members did it on a combination of steady, deep love, and an alarming and caustic black humor. They had so many inappropriate jokes about the illness. It was like the third person in their marriage.

As a person who is now married, I am deeply afraid of what's coming. But I recognize that it's coming for us all, and that marriage is one of the strategies that people have developed in order to cope with death, with loss, with illness and pain. It's so hard to imagine who we will become as age and illness catch up with us. It's hard to look at our loved ones and imagine them changed.

Sequence has a bunch of good advice. Why are you reading these stories, why are you trying so hard to imagine exact scenarios? Back away from the internet and start talking to people about how these things make you feel.
posted by Lawn Beaver at 7:02 AM on July 8, 2019 [3 favorites]

I think the purely ethical answer is no, it's not OK to get married with the plan to bail in case of a serious illness. It's enough of an ethical breach that if a friend of mine did something like this to a spouse, we would not be friends anymore.

As a cancer patient and the sister of someone who died from cancer, I can tell you that while spouses rarely decide to opt out, people with serious illnesses can count on at least one or two friends disappearing. When that happens, while it's very hard, I try to accept that these people weren't really friends in the first place. The people who do stick around are the people you are grateful for.

You name "security" as one of the things you like about marriage. What does that word mean to you? To many people, it means that someone will stay with you during hard times.

I agree that this is an anxiety issue that you should probably see a therapist about. However, I want to raise one other possibility. When I was in a serious relationship and about to get married, I started having all sorts of questions about marriage that I expressed in a general way, but I think the real issue was that I knew I was about to marry the wrong person. I didn't realize that, and I did marry him. It was a huge mistake. This may totally not be the case for you, but it is something to think about. Is there something about this person that makes you want to plan as escape if things get tough?
posted by FencingGal at 7:05 AM on July 8, 2019 [11 favorites]

I imagine the kind of relationship I have now with my partner withering away into only a kind of "warm, familial, like-a-sibling" kind of love, and it makes my stomach turn and my chest tighten. It totally repulses me.

For what it's worth, I would give up every penny I have and my left arm to return to the warm and familial (still sexual, but very rare) 10-year relationship I just exited.
posted by ftm at 7:15 AM on July 8, 2019 [9 favorites]

Do you know any actual disabled people?

I was disabled at 40 due to kidney failure (I was born with a bad gene so it was inevitable) and I'm on dialysis three times a week, and part of the reason I stopped seeking a partner after my initial diagnosis in my 30s was the tremendous fear that they would leave me as soon as the going got rough. Certainly my former husband wouldn't have stayed. At this point, I'm giddy with happiness to be solo and certain I'm better off for it, but it's been A Thing getting to this point.

More than half a million Americans have kidney failure, and most of them had no idea they had kidney disease, so it's not an uncommon thing. And it's pretty common for dialysis patients' partners to leave them. We're tired a lot. We're forgetful. There are lots of medical appointments. We have limits on travel and the ability to contribute income because it's all so exhausting. Husbands often leave because their sick wives can no longer do the cooking and cleaning and all the household emotional labor like they used to. Wives leave because reasons and reasons and reasons.

And you know what? Every day I thank my lucky stars that I'm single so I don't have to deal with a partner suddenly deciding I'm too much of a burden and leaving me, on top of me having to deal with all the appointments, medical bills, weird medications and side effects, and everything that comes with living with a major disability.

And maybe I never found the right kind of love. My dad lived with kidney failure for 25 years (and dialysis, and two transplants, and ER visits, and the uncertainty wrapped up with all of that -- a few times, we nearly lost him) and my mom stayed right by his side. Things were tough sometimes. Mom picked up a lot of the slack at home. At the very end, she nursed him through hospice, at his bedside caring for him when he could no longer walk, no longer speak, no longer stay with us. She said recently that she would have done that for many more years, happily, if that meant she could still have him on this earth.

That's the kind of person I'd want to make a vow to, and to make a vow to me. Wouldn't you, if the tables were turned?
posted by mochapickle at 7:25 AM on July 8, 2019 [21 favorites]

You definitely need to make your views clear to your partner if you haven't. I wouldn't marry someone who felt like this, but he/she might feel differently.
posted by pinochiette at 7:29 AM on July 8, 2019 [5 favorites]

Disclaimer: haven't been in a relationship where I was caregiver, have watched this happen in my parents' marriage and others in my family.

I'm with you in that I would absolutely goddamned suck as being a caregiver and I don't know what the fuck I am going to do when I am eventually forced to be that for my mother. It gives me pause in a relationship too because I know how it goes. But even if you never settle down and get married, you may end up being forced to be a caregiver to a family member anyway (especially if you are the nearest female to the ill person), so it's not something you can escape in your life as you and everyone else ages, unless you have a few millions to spend on nursing staff. (Note: the one action I think you can maybe look into is making sure you've got a lot of money and/or really great insurance....)


(a) You don't know how it's going to play out, at all, until it happens. Every case varies. Someone who's depressed is different from someone with curable cancer vs. someone with incurable cancer vs. Alzheimer's/degenerative disease (the stuff that runs in my family). The situation may not end up as bad as you think or it may be even worse, but until someone comes down with something, who knows what you are going to get. I'd imagine something curable is somewhat different from permanent incapacity.

(b) You may end up the ill person instead and would you want them to abandon you? Especially if you are so ill you HAVE to have someone take care of you?

(c) Also, I feel that once you're in the relationship, you are kind of well, trapped once you're in. We've all heard shitty stories of a husband just walking out the door on his wife once she gets diagnosed with cancer and everyone hates those guys. Nobody will think well of you if you abandon someone who's ill (especially if you're female) and it's "not their fault." There will be whopping guilt if you leave, even if you've basically said "honey, if you come down with something, I'm gone, cool?" ahead of time. That's not something you can work out ahead of time or establish. A lot of people will reasonably not want to be with you if you say you will bail on them in hard times and those who are fine with it may not be the best people.

I just feel that this is a horrible problem that can't be escaped from as long as you are a human being involved on any level with other humans, though. Watching someone deteriorate is a fucking nightmare. But it's going to happen on some level to everyone sooner or later and we're all just going to have to deal with it.
posted by jenfullmoon at 7:34 AM on July 8, 2019 [3 favorites]

Basically, what I want to ask people is: do many people think this way? Is this acceptable, or is it really horrible and morally beyond the pale? Are there people out there who have actually structured their marriages like this, where there is a mutual understanding that the irretrievable loss of the romantic and sexual relationship would be grounds for ending the marriage, even when poor health is the cause?
It's not horrible or beyond the pale. It's the kind of thing you and your partner should be explicit about. But, it's also a low probability event. You're a lot more likely to choose to divorce a healthy person. That's worth spending more time thinking about. (Also, don't forget that monogamy is but one choice among many and not an essential part of marriage.)

When I married, we went to great lengths to avoid any mention of a binding, long term commitment. "'Till death do us part," was right out. Committing to honesty and good will is great. "Forever," is absurd. A bit over five years in, marriage has been fantastic. Knowing the other person is under no commitment (aside from wanting to avoid paperwork and the hassle of moving) is a very small part of the reason.

Personally, if I were physically incapacitated but mentally unchanged and able to communicate, I rather hope that my spouse would stay with me and spend at least a few days a week having great sex with other people. (But, I wouldn't blame her if she did leave.) If I was injured in a way that made me a different person, I'd hope that she'd move on to a meaningful relationship with someone else as soon as it became clear I would never be the same again. Ideally while leaving me enough retirement money to be reasonably cared for and making a few care decisions she knows I want before the divorce.

Having talked at length with a former long term partner who watched a young spouse with a terminal illness take many years longer to die than expected, I wouldn't wish that experience on my worst enemy, much less someone I love.
posted by eotvos at 7:41 AM on July 8, 2019 [5 favorites]

This is a very good question for both a relationship counselor and an individual therapist.
posted by restless_nomad at 7:43 AM on July 8, 2019 [2 favorites]

I think your focus on physicality is interesting, because what I would fear is having to care for a partner in a situation like dementia or Alzheimer’s in which their personality seems wiped away. But when I’ve been in love with someone, I wouldn’t care if he lost every limb, if he was just a disembodied voice floating through space for me to communicate with, I want to be with him, and to me that wouldn’t take away the romantic nature of the relationship at all, even if I could never see his face again. What I would struggle with more is standing by someone who was in a coma for ten years or something like that, where our communication goes away. But ethically I can’t imagine not staying with someone in that situation. There are some things that we owe each other as loved ones, fair or not, fun or not, and that’s one of them to me.

I agree that if you genuinely feel this way and it’s not anxiety talking, you should be upfront about this with your partner. I would not marry someone who felt this way.
posted by sallybrown at 7:51 AM on July 8, 2019 [11 favorites]

I am intrigued by the fact that you've been so captivated by accounts from the spouses/caregivers of people with chronic medical conditions and don't seem to have considered what the ill partners say about their experiences in general, not to mention how they feel about their partners. It's interesting that you seem to be assuming and centering your anxiety around the idea of being the one who leaves the marriage and not the one who becomes ill and is left. I'm not sure you'd find walking away and grieving quietly such an ideal solution as the person who literally could not walk away, and perhaps that's the root of the problem. Maybe you're looking for a way to control the uncontrollable in an attempt to assuage anxiety that it could happen to you. Definitely something to investigate with a professional.

As someone with chronic illness and a member of support groups exclusive to people with that illness, I agree with Stacey and others above in pointing out that online support groups skew to the negative. What you're not picking up is that some of those spouses who are desperate to leave their disabled partners are lying to themselves and their support forums because they don't want to feel like The Bad Guy. They probably don't mention that their spouse was doing most of the emotional labor, or the childcare, or the cooking. Talking about new symptoms or concerns about an illness that will never go away becomes "complaining all the time and not trying to get better" (an actual quote from the now-ex of a member of a group I am in - for people with a genetic condition).

You know why some of those disabled partners are angry all the time? Because they can't do what they used to and nobody's picking up the slack. Or they can't bring up anything about themselves without being considered selfish by their partner. There do exist accounts of happy (and, yes, sexual) relationships in which one partner is chronically ill or disabled - some have been pointed out in this thread. Read some of those, if you must read something to feel more in control of life.
posted by camyram at 7:57 AM on July 8, 2019 [21 favorites]

You need to examine the way you think about disabled/ill people. Your attitude seems to completely ignore that people dealing with disabilities or illness are still people. They are not, like, empty shells of human beings. In your shoes, I would spend some time re-examining that attitude before getting in a romantic or sexual relationship with anyone at all.
posted by augustimagination at 8:08 AM on July 8, 2019 [43 favorites]

You should really only be in serious committed relationship with someone you want to suffer with because a truly good life is about making the best out of the inevitable suffering.
posted by srboisvert at 8:08 AM on July 8, 2019 [6 favorites]

Something changes when a spouse gets ill — the illness doesn’t just happen to them, it happens to you, both of you.

This is true; illness is transformative, and one of the things it often affects is the set of compromises that go into a relationship, compromises that can be hard to unwind or reconfigure when the underlying circumstances change. But as jenfullmoon says, every case varies.

Sometimes there are situations where all the best efforts and intentions and love and professional help may not be enough: where sickness creates sickness creates sickness. But this isn't something one plans for or should plan for.
posted by holgate at 8:23 AM on July 8, 2019 [1 favorite]

With inheritance rights and uncontested lineage being pretty much being a thing of the past, support is pretty much the entire point of a family unit. If you're not on board there's really no point in marriage in the first place.

Also, you might want to reexamine how you think of sexuality in a relationship. One day you are going to be old, and in all likelihood sick. Like all human beings, you are going to be unattractive. You will want your partner to stay with you even when you are not attractive anymore.
posted by FakeFreyja at 8:32 AM on July 8, 2019 [10 favorites]

A friend of mine is married to a guy with cystic fibrosis. It's not the kind of thing you hide, she knew from pretty much day 1. I wondered for a long time why she would knowingly go into a relationship with someone with a shortened life expectancy, but of course the answer is that she saw someone she wanted to build a life with and she did so.

And, yea. I know his daily therapy can be gnarly. He ends up in the hospital periodically to get them to beat back the MRSA a little bit. He'll need new lungs eventually, I think. She went through a lot of hell to have his children, with genetic screenings and IVF and all that. But they have a wonderful little family and they are making the most of it. They travel together and do all sorts of stuff, and if he's slowed down for some reason they work around it.

And it's not like she's never needed help of her own. She's been on strict bedrest for months while pregnant, broken bones, had knee surgery, etc. And they deal with it.

Basically, she went into it knowing that "in sickness" was a day to day reality for them, and not some future risk that someone might get cancer. I think she handles it better than I am handling health issues in my own marriage.

also don't be like my ex who did tell me to my face that if I ever had to have a mastectomy he'd have to leave me.
posted by cabingirl at 8:37 AM on July 8, 2019 [12 favorites]

people whose spouses are no longer there as they knew them, who require so much care that it derails their romantic and sexual relationship
This happened to my parents. When I was a young kid my mom had a nearly-fatal illness requiring a grueling treatment regimen and survived that. 20 years later, as I understand it, the long-term impact of both the illness and the treatment started catching up with her, and from then on over a period of several years, her health declined to the point where she was no longer able to physically care for herself nor be a conscious, equal participant in any relationship. She died before reaching retirement age.

My dad stayed with her and cared for her through all of this. For this he has my everlasting and unequivocal respect.

I don't judge you for asking this question. Having seen this kind of situation up close I won't minimize the impact it had on all of us as a family and on my parents' relationship, and I've thought about whether I can live up to that "in sickness and health, until death do us part" standard myself.

I have also seen that there is definitely a middle ground between "total, unmitigated hell" and "everything is awesome, this experience has left us more starry-eyed-in-love than ever". I don't know about the sex part (none of my business!) but I do know that my parents' marriage remained loving in a romantic sense well into the time my mother's health started to decline. They continued to live a married life—their relationship was not sibling-like, and I agree with others that's a strange assumption to make about what happens when someone becomes ill or disabled.
do many people think this way? Is this acceptable, or is it really horrible and morally beyond the pale?
I think, if after sincere and thorough reflection you find you just don't have it in you to be a long-term caregiver for your ill spouse... well, so be it. You do have a moral obligation to be very, very clear about that up front with any prospective long-term partner or spouse. It's not unethical to avoid making a commitment you know you can't live up to. It is unethical to make a commitment you know you can't live up to and then bail out later.

The "committed" part in "committed relationship" matters and it's not just about sexual exclusivity But, how you implement "commitment" is going to be different for different people and circumstances. There are cases where divorcing an ill partner is not unethical. There are cases where having a quiet affair even if you are still married is not unethical. And there are cases where your love for your partner stretches and endures through what you once thought was unendurable.
posted by 4rtemis at 8:49 AM on July 8, 2019 [12 favorites]

I imagine the kind of relationship I have now with my partner withering away into only a kind of "warm, familial, like-a-sibling" kind of love, and it makes my stomach turn and my chest tighten. It totally repulses me.

1. Nthing other people who note that your relationship might become that kind of non-sexual, familial relationship even if no one gets sick. As I have noted roughly 4 billion times here on the green, that happened to me. It is one (but only one) of the reasons I left my husband.

2. Your feelings may be based on anxious, as suggested above. I am here to say that this particular Internet stranger gives you permission to tell your partner that you do not have the ability to care for them if they become seriously/chronically/whatever ill.

One of my friends died of cancer and I went and saw him in the hospital at various times and visited him when he was dying at home as often as I could. A mutual friend never made it to the hospital to visit. She was guilt-ridden over that failure but it was a nightmarish experience for her to visit hospitals so she noped right out. I think adults have a lot of choices. As long as we are honest about our desires/capabilities/etc., then we get to choose.

There are a lot of folks who understandably suspect that you are not recognizing the humans behind the illnesses. Why would you? You have been reading other peoples' stories and you are imaging how you would feel and deciding you never want to feel that way. After I left my husband, I was in a relationship with a person 10+ years older than I. Fairly early in our relationship, he told me he wanted me to take care of him when he got old. I looked him straight in the eyes and announced that such a thing would never, ever happen.

I think he expected to wear me down. Eventually, we broke up over other things. But I was as serious as death. I had taken care of my younger sisters, then my ill mother, and then raised a kid in challenging conditions and I just wasn't willing to take care of him. I am also not willing to care for my ailing, elderly father. I will visit him twice a year, but I will not move in and care for him the way he insists I should.

You know who I am willing to take care of? My husband. We haven't lived together for 12 years. We have a sibling-like relationship. He is a swell guy. Tomorrow morning he is having an operation to address a touch of cancer. It does not appear that he will need much caretaking, if any, after the operation. But I am meeting him at the hospital when he is ready for release and will be hanging around for a few days to help out if he needs it.

If caring for a sick spouse sounds like hell to you, seriously, discuss it with your partner but only after seeing a therapist. If a no-sex marriage for any reason sounds like hell to you, again, go see a good (which means a good match for you) therapist. I don't think your opinion about sexless marriages and/or an ill spouse makes you evil or sick or anything terrible necessarily. You may just be more honest than a number of other married people. It doesn't really matter what other people think, anyway. It really only matters what you and your partner think and, ideally, are able to come to an agreement about.
posted by Bella Donna at 8:58 AM on July 8, 2019 [7 favorites]

What you and your partner need and want today may not be what you need and want in 15 or 30 years. For me, the ideal was a partner with whom I would be interdependent, we'd take care of each other as best we could, we'd grow and learn together. In my case, I picked a terrible person, so it didn't work, but it does work for some people. I do see relationships where people care for their spouse through tough times. My step-dad cared for his quite old mother who had dementia.

Do you want kids? Cause you get to decide if you want to stay with a sick spouse, but kids get chronic and severe illnesses, some of them are mental illnesses, physical and/or intellectual disabilities, and you pretty much have to care for a child with an illness or disability, for their lifetime, especially if you are a woman.

Sequence is dead-on about anxiety. It's worth asking yourself if the anxiety is about the idea of marrying the person you're with, marriage itself, or some other issue that is coming out as anxiety about caring for an ill partner.

Also, long-term care insurance exists. I just talked to someone whose spouse died recently after a long illness. They provided a lot of care, but they had long-term care insurance and had good in-home care, so that the burden didn't swamp them.

Are you able to talk to your partner about your fears? Because how you answer that would say a lot about the relationship. There are a lot of thoughtful answers here, and I think you put your question in a straightforward way. I wish you the best.
posted by theora55 at 9:09 AM on July 8, 2019 [1 favorite]

I am a disabled woman. Periods of my heterosexual marriage have been sexless. I once offered my husband the opportunity the pursue outside opportunities. He declined. I never brought it up again and he accepts that there are cycles of wellness. I do what I can when I can and intimacy comes in many forms. A lack of “traditional” sex does not indicate a lack of love or intimacy. It does not indicate a roommate situation. Sometimes it can, but it doesn’t have to.
posted by Ruki at 9:30 AM on July 8, 2019 [12 favorites]

It seems like you are asking this question in the absolute abstract and that it does not pertain to a partner you have now. So you actually are not facing a decision and do not need to make one right now. A lot of what you will or won't put up with will happen not in the abstract, but in the context of a loving relationship with a real, specific human being. And that changes things in a lot of ways.

You do need to be honest about yourself in any relationships you enter, as described above - and early in a relationship it might just be saying "when I think about marrying someone and one of us having a serious injury or chronic health issue I am terrified and want to run the other way." That's a perfectly fine confession. It's just a feeling. It's not even itself a decision at that point. It's something you talk out with a specific partner and explore both of your responses.

It's likely that as you go through life and relationships your feelings will change. You don't need to decide right now whether it's a dealbreaker for you because there's no deal to break. Maybe they never will change, but you don't have to make any strong choices until you are faced with the actual serious possibility of marrying a given person. You can revisit this question then.

Life inevitably dumps some serious shit on people. If this particular fear is the be-all and end-all for you, and you think you can avoid it by planning a divorce in the event of a serious injury, you may be able to do just that and find a partner who would accept that. And then you could both make Living Wills so they can get their needs met even if you leave. But even doing that won't necessarily spare you from other forms of serious shit that can happen with other relatives, or with children, who are harder to walk away from. There are going to be really tough things in life. This is just one flavor of that.

In general I'd say give yourself a chance to grow on this, and other than acknowledging and addressing this as a real fear you have and being honest with partners about that fear, you don't actually need to do anything about it right now.
posted by Miko at 9:39 AM on July 8, 2019 [7 favorites]

In the months between getting engaged and getting married, I had horrible anxiety dreams about various Enormous Events occurring in our marriage so that I had to make some kind of terrible choice about whether to stay or go (variation B: that I had to make medical decisions for him where the chances were 50/50 that he would not recover so basically I was coin-flipping to see if he'd die/be incapacitated forever).

The very worst one (how many dreams can you remember in detail over 15 years later??) was that my husband decided he was the reincarnation of Hitler and somehow took over an island so he could, uh, reproduce the Third Reich. Like, he was super excited about all the people he was going to kill, and he was on the news, it was a whole thing. And this situation had come on really abruptly, so obviously it was a head injury or tumor or some kind of illness, but he wasn't sick enough to force medical help on and nobody else gave a shit why he was doing this and wtf was I supposed to do? How do I fix this? That dream sucked.

Now, only a few people have to deal with that kind of extreme situation, but this is the enormity of actually choosing a longterm commitment when you are a relatively young person who has only accidentally been in relationships of any real length (by which I mean a couple years, which is nothing in the grand scheme even if it's the longest you've ever had so far). Like, this is what you grapple with. It is normal to grapple with it. It's even normal to think I can't possibly, I'm not strong enough.

And...statistically, we know some people aren't. Men married to women, in particular, have a higher rate of bailing when shit gets real. It's not really much about oh no my boner, that's a convenient excuse that people are allowed to say out loud when the truth is she kept everything running and I cannot possibly be expected to do it myself; who will take care of me now?. And sometimes couples manage to hold it together for the duration of something awful and hard* and then when it's over the trauma is too big and the people they have become in it are not compatible anymore for a million possible reasons.

*which you WILL go through, repeatedly, because the world is a hard place and shit happens. Plus a high multiplier if you have kids.

Forever Or A Close Approximation is scary. It should be, people should confront the scary possibilities and think about them. Couples should have some big scary talks about them before they get married. It's largely hypothetical and a fascinating thing about getting older is how entirely wrong you almost always are about hypotheticals, but the exercise is still important. There's a very good chance that you are in the early individual grapple stages right now and you will come out the other side in a better place than you are right now; don't turn around and marry someone who hasn't gone through that process themselves.

And it is important to process all this and put aside the idea that marriage simply equals romance and sex, and the idea that you even know what romance and sex look like if you've never had a very long relationship. Intimacy is about so much more than sex and romance, and even sex and romance change in ways you literally cannot imagine from Year 2 or 5 or 15. Shaking off the certainty that you even know and learning to embrace possibilities, observe what is rather than what you want things to be, and roll with the punches is one of the ways you keep a relationship alive for decades. Deciding beforehand that you absolutely will or will not do some specific thing is a fool's game.

I do think you are suffering on the high end of reasonable anxiety about this stuff, and honestly I think knowing how to manage completely real anxiety is a major component of a good long-term relationship (marital or parental) so there are many reasons for you to get an assist right now. Maybe back-burner this particular concern for a few months so you can onboard better management/coping skills, and then when you return back to this issue, focus more on the solutions than the poor outcomes. Learn to be a good communicator, learn how to be a human being that grows all the time, learn how to not mire yourself in your own dogma. Maybe do some study on people who have been through the shit and made something good out of it.

I know it's annoying to be told "you won't always feel this way" except that very few feelings last forever so it's generally true in any situation. But you really are likely only feeling the pain of growing, not the pain of being this way forever. Trust that you are mid-process on this, and you will be more satisfied with your feelings on it eventually.
posted by Lyn Never at 9:43 AM on July 8, 2019 [14 favorites]

When el_lupino and I got married, I thought he was going to be the sickness and I the health. I was wrong. I think you might like to read some of his thoughts, which don't come from the place of distress that seems to be distressing you:

From Part I:

"There have been people – people I have no need to speak to again – in whom I could sense some exasperation at her failure to pick one of these stories. Get better or get out already, they seemed to say. Maybe the grand scope of history was on their side. Those who got sick and got better could keep up with the tribe as it wandered across the savannah; those that died could be missed and missing them posed no further danger. Those who get sick and don’t get better are a recent invention, held together with pharmacology and surplus nutrition, and no one is born ready for this sort of story yet. How could you be? Maybe you went to bed last night with the whole thing figured out, and you think you’ve written a third story. But The Disease got up two hours before you, had four cups of coffee and reinvented itself after it read your draft. You wrote that story – and a hundred drafts before it – because you wanted to feel like you controlled The Disease, that the world would behave itself if you pushed the right buttons in the right order. But you do not control The Disease. You cannot control it for her, and you cannot control what her suffering does to you. You live a life where those things you cannot control are pushed to the fore. You cannot stop resisting it, because doing so is walking out on her. You must become someone who is not diminished by these things. How do you live a life where what matters most is not in your control?"

From Part II:

"Why make those attachments at all? People have said this to me in all seriousness. They tell me that staying with her is remarkable, and that they just couldn’t see themselves doing it. They’d be out the door in a month, they tell me. I am sure they mean this as a compliment, but I find myself thinking, “Man, I know some no-good sonsabitches.” Not all discomforts are unwanted, and not all detachments free us up. There is a foolishness in craving things so desperately that your desires drag you from one sort of self-ruin to another, always keeping peace out of reach. But there is a hollowing out of a human life if that peace comes at the expense of love or solidarity. If the stoics point me in that direction, this is going to be a short ride with a bad idea."
posted by jocelmeow at 10:11 AM on July 8, 2019 [22 favorites]

This is not something you should worry about now. I agree with the other posters here that it is a symptom of anxiety. It is not good to worry about things that you have no control over and may not even happen.

That said, end of life planning is something every couple should discuss and you should have a living will drawn up. Hopefully this will alleviate some of your concerns and help you think through your feelings before you get to the aisle.

You are not a monster for terrorizing yourself with worst-case-scenario nightmares. Your brain is being unkind to you.
posted by domo at 10:24 AM on July 8, 2019 [6 favorites]

A commitment is a commitment, and if you want a life-partner-type relationship, this is kinda part of the deal; just as it is if your child is disabled. But there are things you can do ahead of time to make it a less scary. The most important thing is to avoid being insular as a couple. This is the norm in the US, but you can instead choose to be active in building a community and to both have significant friendships individually. This will both give you help when you need it but also ensure that you have a real life outside of your partner, so if they're down for the count it doesn't mean that you don't have anyone to do non-health-related things with.

You could also choose to have important, committed relationships that are not life-partner relationships. If you're planning your futures around each other, which usually means making compromises and sacrifices (like moving for one person's job, etc.) it's a dick move to bail when the going gets tough. But if you're remaining independent from each other in important ways, that's a different story. You can form relationships that include some typical aspects of marriage but not others. Here's a diagram of different aspects of relationships which you may or may not want to share with a specific person.
posted by metasarah at 11:10 AM on July 8, 2019 [1 favorite]

Due to my field of work, I am commonly the witness to awful events that have happened to people/chronic Medical conditions that change a person in such ways that they are unrecognizable to who they were.

And this stuff is complicated. No one wants to think about it from every perspective.

There are people who say you are you comitted that's that, and there are those who say leave because this isn't what commitment really means.

It's a huge huge ethical question and I don't think there is a right answer. It's hard. It's hard to live with someone whose brain has transformed a gentle soul into someone who just isn't any more. Who may be abusive or violent. It's hard to aknoweldge that we live in a society that doesn't want to provide help to those who need full time caregiving sometimes for litterally the rest of their lives. That it is bankrupting and that the end may be 40 years away. That there is simply not the amount of support you could need. Some people do it, quit their jobs, live on their partners disability and take care of their loved one. It is hard, but that's what they do.

It's also hard to leave something so fulfilling that you comitted to them for it to vanish sometimes in a matter of seconds. It is a huge real loss.

If this is something you face (and I hope you don't) it is something that can be gotten through. There are options that aren't great, but nursing homes and 24 hour care are available. Ethically you will make the choice that works best for you. There will be many real world constraints (cost, your job, family support ) that will impact that decision. But ultimately you will live with that choice. Sometimes people change their minds. They do caregiving from home and realize it is too much or too dangerous and go a different route. Some people remarry, some don't.

Ultimately, You can't avoid life because of these things, you really can't. If you feel paralyzed in the present because of these what ifs, i urge you to think about therapy and/or medication to decrease your anxiety.
posted by AlexiaSky at 11:30 AM on July 8, 2019 [6 favorites]

On reread, the witness sounds rediculously egotistical and I meant a witness. Sorry for the additional reply but it was really bothering me that I wrote it that way.
posted by AlexiaSky at 12:14 PM on July 8, 2019

Well. My initial inclination is to say, no, you should not get married. Where you have a choice, you should choose responsibly and in line with your ethics. I similarly am self-aware enough to know that I did not wish to raise a child with a serious/terminal/disabling illness. And because I feel it would be unethical to give birth to said child and then abandon or raise them poorly, I have decided (for this among many other reasons) not to have children.

Now, I'm generally disinclined toward parenting anyway so this isn't a huge sacrifice for me. But it is a decision that places me outside the mainstream (though less so now than when I first made it) and which puts me in the "morally bankrupt" column for some folks so, it wasn't costless.

Caregiving is difficult, relentless, and in the United States it is more or less unsupported and almost certainly guaranteed to destroy someone's finances permanently. I do not blame anyone who looks at the situation in the US as it is and decides to opt out of as much of that as possible. But you gotta opt out of it NOW, not when your actual human partner to whom you pledged commitment is actually ill in front of you.

All of that said. I think others in this thread are spot-on that this is about something else, or at least something more.
posted by We put our faith in Blast Hardcheese at 1:05 PM on July 8, 2019 [2 favorites]

What I hear at the base of this question is a desire to avoid suffering, which, unfortunately, is not something you can do. You will age, get sick, suffer and die, along with everyone else you know. Creating a marriage with an escape clause will not exempt you from this terrible truth.

The trick we all need to work on is to root ourselves somewhere deeper than “happiness” — to devote ourselves to a life-meaning which doesn’t completely dissolve in the face of suffering. For some people this is devotion to family, for others it is a life’s work, especially one which serves the community/culture/biosphere, perhaps in a political/artistic/religious way. Basically, if you don’t want to be absolutely slayed by suffering, you have to invest your personal treasure in something bigger than your own happiness.

One way people have historically done this is through devotion to partner and family. Having children, for instance, is in many ways objectively unpleasant, in the sense that nobody in their right mind would want to put their bodies through pregnancy and birth, let alone be woken up constantly for months to years, and get food thrown at them and etc. But people do it over and over again, because for many people, though it really harshes one’s pleasure/hedonia quotient, it also greatly increases your life-meaning/eudaimonia quotient.

(I think a lot about people whose lives had a great deal of meaning and also unusually large helpings of suffering, stress, illness, misfortune and discord — Martin Luther King, Malcolm X, FDR, Frida Kahlo and Diego Rivera, Joan of Arc, Mother Theresa, Silvia Rivera, Oscar Romero, as well as all the unacknowledged forest protectors, animal rescuers, mothers, fathers, foster parents.)

Of course, you can negotiate marital escape clauses, be polyamorous, or anything that suits both you and your partner(s), but still — you won’t be young and hot forever. You will eventually experience the suffering of having those happinesses taken away from you, whether through aging, divorce, illness or death. It sounds like right now you feel a lot of terror about not being able to cope with that loss, which is perfectly understandable. But it’s also a diagnostic telling you that your life may be imbalanced — that your way of living, and conceptualizing your life, may be over focused on happiness/pleasure and underfocused on life-meaning/community/devotion.

In short: spring is beautiful, but winter is inevitable — get a warm coat.
posted by hungrytiger at 1:06 PM on July 8, 2019 [35 favorites]

Something I don't think I've seen mentioned is the possibility that this is actual misplaced anxiety about the relationship itself.

Is it possible that on some level, you know moving forward with your partner is not a thing you want to do, and you're working through it by this sickness issue? When I was younger I would struggle knowing what was really bothering me and I would get worked up and upset about non-issues, but those non-issues brought me to the realization that I didn't want to continue with whatever it was.

So maybe you don't actually want to get married and this is just something your brain is doing to get you to that.
posted by yes I said yes I will Yes at 1:57 PM on July 8, 2019 [5 favorites]

I kind of think you felt into an Internet hole and this is the equivalent of seeing a horror movie for the first time and that your brain is flashing these scenarios at other words, anxiety. So I would stay off those forums, relax a bit, and see if it calms down. What you are feeling is just that, a feeling. Before your current partner did you ever feel like you might be single forever and OH NO or maybe when you were young you thought you would never have sex...or ride a bike...but all those things happened.

Maybe your visceral feeling that you cannot handle this is - just that, a feeling. It may well be information about your relationship or yourself. But it's not actually how you might behave.

Have been married 25 years, and not yet facing that situation (but having taken a baby off life support and buried her), I think that the ethical thing to do is give yourself a few weeks and then talk to your partner about your fears. Rather than seeking an absolute rule, seek a partnership with the person you love. Because every challenge you can foresee, and most of them you can't anyway, will require that response. So this is a great chance to try it out.

In the meantime, sometimes I feel like a broken record recommending this book, but Jean Vanier's Becoming Human is a great examination of our prejudices about disability and flips a lot on its head. Speaking out of that perspective...what if it is actually romantic to both care for, and be cared by, a spouse? What if that kind of love is awesome?

I am guessing you won't believe me, but after 25 years of a pretty darn satisfying sex life, my husband and I can almost have sex just by looking at each other, because we know what each other is thinking and for me, my body has so many memories to access, it's kind of...great, in a way that couldn't exist without the 9,000 days we have shared with each other on this earth. Nine thousand days and we may get 9,000 more, or today may be the last. That's all you get in a relationship really, is today and today and today.
posted by warriorqueen at 5:54 PM on July 8, 2019 [13 favorites]

This seems like an oddly specific hole of fears to fall down into with regards to marriage. Do you have some greater fear about being called on at some point to really have to take care of someone else? I have an almost knee-jerk resistance to being forced to take care of another person or being. Fortunately, the beings that are in my orbit and care have all come to me because I chose them to be in my life. I have not been called on (yet) to drop everything and care for someone else without my being okay with it.

Also, anecdotally, I've known two women who's husbands had massive strokes leaving them wheelchair bound and non-communicative. I think in both cases, the wives looked on their now invalid spouse as another child who needed caring for. I can't say that I would have the same reaction especially if my husband's poor lifestyle choices had led to his disastrous outcome (for example, refusing to treat hypertension).
posted by tafetta, darling! at 6:13 PM on July 8, 2019

This thread is probably beat to death, but one more affirming story. My wife and I have lived together for five years, and have been married for two of those. When we met, there were a lot of things her body seemed to struggle with, compared to others of her size and build. Some conflicts emerged. I wanted to spend a day or even days hiking, walking, kayaking; she could put up with an hour. I thought she was out of shape and refused to admit it; she thought I wasn't trusting her when she said it was different. And she was right. So I put it aside. Her health got worse, and we went to doctors and doctors and doctors. Every time a surprise new symptom would come up, she'd get another pill. Once, in the middle of the night, her face swelled and her airway closed, and we drove to the hospital, where I was taken aside by a nurse and asked to give information on her next of kin. We never found out what caused the anaphylactic shock, and she now carries an epi-pen and an inhaler everywhere, just in case.

When we got a few diagnoses, some names we could use for her symptoms, things started to make sense. It happened a year before we got married, and it didn't change a thing about us getting married. There is no doubt that her health is a third partner is our relationship. Her health influences all kinds of decisions for us. What we do for fun, where we go on vacation, even where we live (need to be close to a pretty good hospital, just in case), and probably most importantly, our decision not to have children. But we've learned to treat it as a partner, not an anchor we're dragging behind us. There are days where I have to be more of a caregiver. So far, that hasn't involved really intimate caregiving like toileting or showering, but we're aware that someday and sometimes that may be the case. We're preparing for a major surgery next year, and those things will probably be necessary for a bit. But I'm not worried about it; I love her deeply, she trusts me deeply, and I'd rather she be in that place of pain and vulnerability with me than with a stranger.

For me, I think the way we deal is by accepting that we don't know what will happen, and making sure that we consider everything equally. I sprained my arm pretty bad last week, and for a couple days, I felt like I couldn't do anything: wash the dishes, take out the trash, even button my pants. And I'm not used to being cared for that way (I do the dishes like 90% of the time, because it's not hard for me), and I had these horrible cascading waves of guilt for needing any little thing. So she pointed out that of course it was fine, because she doesn't resent buttoning my pants any more than I resent applying her pain-relief cream because she loves me just as much as I love her. There is no truth to the binary of "I'm well and she's sick". I could get hit by a car or get MS or have a stroke. And she would care for me. Her health could degrade or improve, and I'll take care of her. And now that we know how to do it, we are walking and kayaking and doing yoga and living a very rich and active life. We have it because we help each other even in ways that seem like apples to oranges. She taught me how to develop my career and take care of my money and generally be the kind of grownup I'd like to be. I taught her how to kayak and live on less money and follow her passions. We make each other better. And while we still have sex, it's sometimes less frequent, and that's okay too.

So, as a caregiver of someone who is skirting disability, and is likely to be disabled in the future, I understand your concerns, and it's important to be able to ask directly. But I think when you find the person you should marry, you'll put in that work, because you help people you love. It can be tiring and I have seen it really wear people down, but that's just what life does. You will get old and sick. Everyone does. But given a choice, I would rather be old and sick with the love of my life than young and healthy without her, because life is hard, but it's easier together.
posted by skookumsaurus rex at 8:22 AM on July 9, 2019 [8 favorites]

I agree with the comments above suggesting this is a general anxiety thing rather than a marriage issue. If you’d asked me the same question I probably wouldn’t have said I was too interested in being a full-time carer. I met someone a few years back, and within six weeks she had a “funny turn” and also ditched me. We got together again a year later, after she’d been diagnosed with MS. Now I’m a full-time carer of her, my son from my first marriage, her foster son, and our two kids together. And sole breadwinner and everything else. No, not part of the plan. We got married a couple of years ago (in city hall, because she didn’t have the energy for a ceremony lasting more than half an hour all up). Wouldn’t change a thing (unless we could change her illness, of course :))
posted by tillsbury at 11:03 PM on July 9, 2019 [1 favorite]

I recognize a lot of this kind of thinking and worry. There's good news and there's bad news.

The bad news is, no matter what you do, you can't insulate yourself from bad things. We live in fragile human bodies and we love other people who are in them too. We end up dependent on each other for things large and small. If some terrible disease or injury strikes you or your partner and gives them terrible brain damage or otherwise erases your relationship, that will be awful, and no amount of planning in advance will be able to un-awful that.

That is also the good news. You actually can't control this. It is not certain to happen, but if it does happen it will be a bolt out of the blue deserving of shock. Make the plans you can - living will, discussion of wishes, etc. Talk with your spouse about your feelings on remarriage and affairs. But to cut yourself free of mortality and dependence is beyond our grasp, and you shouldn't expect that of yourself.
posted by Lady Li at 1:06 AM on July 10, 2019 [1 favorite]

My husband was diagnosed with a very serious cancer within a year of our marriage. I ended up having to work full time and be his caretaker as he went through treatment and surgeries and ultimately lost his battle.
I will not deny the fact that many times I wanted to run away from the situation, who he had become when he was on extreme pain medicine, the physical altercation that happened. However, this was the person I was madly in love with and took my wedding vows very seriously - through sickness and health & until death do we part. It was the the only thing I could give to him and I regret not a damn minute of pain the whole experience caused.
Long term? Let's just say with my hindsight I'd have been thrilled if even pieces of him were still around.

I guess where I'm going is hindsight is 20-20. Our battle was only 7 months and I have zero clue how I'd have continued that even longer. I also have these feelings about having kids.

Sorry for my non-answer, just empathizing.
posted by hillabeans at 2:20 PM on July 10, 2019 [3 favorites]

Marriage is 110% commitment to the relationship including any good or bad things it might entail. It’s the most critical promise that many of us will ever make because it allows for no exceptions. If it seems okay to walk away from a spouse because they are seriously ill, it seems you may not be ready for a commitment. And that is totally fine — rushing into marriage is a terrible choice.
posted by Kalatraz at 11:14 PM on July 10, 2019 [1 favorite]

First let me say that the way you feel is the way you feel, and it's totally valid. Nobody gets to tell you "don't feel like that," or "don't think like that," because that denies the things you've experienced and thoughts you've thought that result in you feeling and thinking like you do currently. That sort of mental and emotional fascism is a really futile, idiotic attempt to rewrite your history, I think, and it's best ignored and avoided.

So of course it's acceptable to think like that. I think it also takes courage to express a position that you worry may not present you in the best possible way.

I'm a slightly less young person who used to feel fairly similarly to this. My feelings about marriage have changed over time, but I felt that way when I was younger for good reasons.

I very nearly got married around the age I'm guessing you are, and it would have been a very large mistake. So as to whether you should get married right now -- probably not.

I personally deal with anxiety a *lot* of the time, and I think it's worth considering whether there's an anxiety component. Then maybe asking - of things I've been similarly worried about - not structurally, but at the same magnitude - how many times did what I was worried about actually happen?

(For me, this is a sign that anxiety is doing its unhelpful meddling: "Recently, just sort of by accident, I did a bunch of reading about people who have developed major health issues or been involved in terrible accidents, and how this has impacted their spouses." Reading -> worrying is not usually a helpful pattern, for me at least, because what's been good for my sanity over the years is just not reading that kind of stuff. If you're anxious because of events that happened to you or those close to you, that's a bit different.)

And relationship stuff used to be one of the worst sources of anxiety. I think partly because it involves this whole other person, who can hurt you and do unpredictable things, and "unpredictable" is not anxiety-friendly.

What's changed my opinion about this was partly growing older and more decrepit (and realising that everyone my age was doing the same), and partly just having some relationships. The "growing older" part meant that who I was attracted to and why changed, and I found I was attracted to people I wouldn't have previously been interested in. Especially when I was younger, the idea of "being older and being attracted to people who are also older" was foreign and hard to grasp. Now it's not so much. If there's something you shouldn't do, don't try to live all the ages of your life during any one particular age. Things change - but enjoy being young, things can change later.

Just having some relationships, did actually highlight in particularly clear ways that some of the things I was deliberately selecting for when choosing partners - mainly physical attributes - were not doing much for my sanity and stress level. There were also cultural factors that I seriously underestimated when initiating (or "what the hell just happened" ending-up-in) some relationships. And I'm now with a person where there's such a deep level of care inside me, a very unexpected tenderness, that the thought of bailing at the appearance of hard things is not on the radar at all. The thought of her being ill and me not being there isn't something I can deal with - the "but us together" wins out over everything. That's new for me, but it's something I wouldn't trade.

That's my journey. Yours doesn't need to be the same, but there's more ways of living, down the road a bit, than younger me realised. And don't underestimate your own ability to choose - you can make decisions and say no. If this all remains a worry and you want to get married, you're perfectly within your rights to find a partner with great genes and virility and amazing stress tolerance.
posted by iffthen at 1:21 AM on August 6, 2019

And this advice above from Lyn Never:
There's a very good chance that you are in the early individual grapple stages right now and you will come out the other side in a better place than you are right now; don't turn around and marry someone who hasn't gone through that process themselves.
Is really great. Best thing my counsellor ever said - don't ever be with someone who hasn't, themself, done the hard yards of getting to know themselves, if you have done that.
posted by iffthen at 1:47 AM on August 6, 2019 [1 favorite]

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