this post was submitted on 28 Nov 2024
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Sorry for the long post.

I was committed to a trans man for 30 years (we got together in 1989). We couldn’t get married for most of that time because it was illegal, but we represented ourselves as married since about 1991, which tbh in some cases meant breaking the law on legal documents to try to get fair representation, so I wouldn’t be excluded from ‘married’ benefits in healthcare, housing, etc. Once he was able to ‘pass’ and we lived in a new state where people wouldn’t out him, he stayed in the closet, and almost nobody knew he was trans since the early 90s. We just wanted to live a normal life. The only people who really knew were our healthcare providers, because that was the only place it was an issue.  

We had a mostly happy marriage and raised a wonderful son – he’s 27 now – until about 15 years ago when my disability started getting really bad. I was born with Ehlers Danlos and an autoimmune disorder, which I was mostly able to compensate for until it started getting really bad in about 2010. I had built a career in software development and UX design, but I developed Dysautonomia and started having seizures, major heart issues, and GI intolerance to the point I couldn’t process food. I worked for a couple of years after that, but it became impossible and I had to give up the career I loved and go on disability. We were pretty well off – not rich, but comfortable – and my inability to work didn’t jeopardise our financial stability that much. Between the benefits of my career and his (he was a regional director in university housing), we had been doing okay.  

It took several years for me to be diagnosed, since what I have is extremely rare. It’s also degenerative, and there’s no treatment or cure. It only gets progressively worse. I’ve never liked sex, but I did it because he liked it. But the sicker I got, the more I just didn’t want it. It’s very hard to force yourself to have sex when you feel like you have the stomach flu 24 hours per day, 7 days per week, 365 days per year.  

He started getting annoyed with that, and angrier at the sex situation the sicker I got. At first, he’d leave pamphlets and books around the house with titles like ‘How to enjoy sex when you’re disabled’. It felt very passive-aggressive, and I started feeling resentful. Eventually it turned into him shouting at me in public, and I couldn’t take it anymore. Between my progressive disability, the constant pressure, and feeling increasingly alone and worthless, I became suicidal. I found myself holing up in the toilet, crying for hours, and just wishing it would end. I asked for a divorce. He was clearly deeply unhappy with me, and I loved him too much to do that to him. I still do.  

Partly because we’d only been legally married 4 years before that when it finally became legal (still not in my state; we travelled to a legal state to do it), even though we’d been representing ourselves as married for 30 years, and partly because my divorce lawyer basically snubbed me after he got my husband’s legal records – clearly because he didn’t approve of the relationship (he didn’t even show up for court and stopped returning my calls, but I couldn’t afford the retainer for a new lawyer), I was left with nothing. No alimony, no savings, no retirement because we’d cashed out mine in favour of his (yes, I was stupid, but he controlled the finances and I never thought our relationship would end), I was left with literally nothing but half the debt.  

My ex-husband was married again within a year of our divorce (to his high school sweetheart who he had kept contact with – their friendship never bothered me, because I am not a jealous type) and they make 6 figures. I now live on nothing but disability, am overdrawn every month, and have to choose between medicine and basic necessities. I’m supposed to drink ensure and pedialyte because of my digestive issues, but I can’t afford it.  

I’m homebound and completely alone now, and I have no social network because all of my friends and most of my family have died in the last few years. I’d kept my son away from my ex-husband’s family for his entire life because they are abusive, narcissistic sociopaths and I valued my son too much to expose him to that, but since the divorce, my son moved to be near his father and connected with them. They always hated me, partly because they blamed me for ‘enabling him to become trans’. They literally had said that. After a few months’ exposure to them, he visited me to have a short conversation in which he told me I’d always be his mother, but he didn’t want to be around me anymore. We’d always been very close with a great relationship, and this broke my heart. I don’t think I can recover from that.  

I don’t know what to do. I can no longer afford to live, and Medicare is wholly inadequate for my healthcare needs, but I can’t afford the gap insurance. My teeth all need pulled now since I can’t afford dental care, and all of them hurt (sjogrens syndrome rots my teeth). I can’t afford even Medicare’s copays. Every month, I am staring down homelessness, and the stress only makes my dysautonomia worse.  

I no longer have good days. A few years ago, I wrote a scifi novel, but I don’t feel well enough to promote it. I have no energy for social media, and that’s needed to sell books. I’m pretty good at writing and am working on another novel, but I’m so consumed with stress over finances that I can’t focus. I honestly feel that all of society right now just wants me to die.  

What’s worse, I feel like my inability to just conform and have sex is what led to this. If I had just been able to suck it up and do the deed, I’d not have lost my marriage, my husband, my son, and everything.

e: 15 yrs, not 10 – I’m bad at numbers

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[–] nikaaa@lemmy.world 3 points 2 hours ago

First of all, don't feel bad for not having sex. The right to a self-determined life is important, be it sex or no sex.

I'm very sorry for your story. If you'd live in a society with better social welfare, I'm sure you'd do much better. Unfortunately, I don't really have good advice for what to do in your situation.

[–] JackbyDev@programming.dev 4 points 10 hours ago

he didn’t even show up for court

How is that even legal?

Also, I was under the impression that unless you sign a prenuptial agreement, everything both of you own gets split on divorce. Even things you owned before the divorce.

[–] Head@lemmings.world 13 points 13 hours ago

Send this post to your son. It's not dignified, but you need to save your own life right now.

I would love to buy your book if I had a link to do so, and I'm sure a lot of other Lemmies would too.

[–] Aielman15@lemmy.world 16 points 16 hours ago

I don't have any solution for you, but for what it's worth, I would like to point out that what happened is not your fault, and certainly not the result of you being asexual. You were (and still are) ill, and your husband wasn't willing to give up his wants for your needs.

I know it's not a game of blame, but I don't want you to resent yourself and your own identity for a situation that unfolded outside of your control. People, society at large, and life itself sometimes are just mean to some of us for no reason, and... There's nothing we can do about it. I don't know if that's comforting, but at least find solace in the fact that you didn't do anything wrong. I'd rather you hate the rest of the world instead of yourself.

I'm sorry I don't have any advice for you. For what it is worth, you have my deep compassion and my best wishes that, whatever happens from here on out, you'll find your way.

[–] Cracks_InTheWalls@sh.itjust.works 25 points 20 hours ago (1 children)

I...just...wow.

I wish I had something comforting to say. It is terrible that you have had to suffer this way. I can only offer you an anonymous e-hug. 🫂

[–] LillyPip@lemmy.ca 14 points 20 hours ago

Thank you. Your empathy is very kind. 🖤🩶🤍💜

[–] j4k3@lemmy.world 14 points 19 hours ago* (last edited 16 hours ago) (1 children)

You're probably around a decade in front of me in situation. I have no solutions. At least you had someone. I was disabled 10.5 years ago by a terrible driver. I haven't had a relationship in 14 years. I have no social network. I already feel the pressure to just die.

I have no idea how to write or promote anything. I don't do corporate social media because it is depression fodder. About a year ago I started putting together a science fiction universe. I basically wanted to take Asimov's Daneel and take the abstract concepts to a different level while flipping the philosophical concepts of AGI.

Want to talk out some stuff for fun? It might help spin some gears of motivation. I'm going for very hard science fiction. No aliens, no FTL, no naval drama, no planets, but I can still make it interesting and different than anything I know of so far. I like to imagine what the future is likely to be like in real life.

[–] LillyPip@lemmy.ca 8 points 18 hours ago (1 children)

I’m sorry you feel that way. The fact that society is completely geared for abled, conforming people leaves people like us with no support whatsoever and that’s not fair.

I’d love to talk with you about your ideas. Feel free to PM me. I’m happy to help.

[–] Ceedoestrees@lemmy.world 1 points 11 hours ago

Hey, I write sci-fi for fun, too. I'd love to chat about writing.

[–] crawancon@lemm.ee 5 points 19 hours ago (1 children)

I'm saddened to read about your situation. I wish I could offer a hug and tell you it'll get better.

it's not pleasant but i would suggest some form of counseling and support group local to your area. I say not pleasant because we both know you or really anyone wants to show up to those, but consider the ones that do. you mag have to drag yourself to one or two to get some benefit. I can't offer any help on the medical condition, but I've seen and read about many folks where sex took a back seat to just living your life with your person.

I'm sorry it didn't work out. perhaps a silver lining is that despite all of that, YOU are still HERE. That means you get to interact with the universe and build/leave whatever legacy you can before you and all of us succumb to the inevitability of lack of time.

[–] LillyPip@lemmy.ca 5 points 18 hours ago* (last edited 18 hours ago) (3 children)

Thank you for the kind words, and I do appreciate your comment.

I’ve sought local groups in the past – unfortunately now I am 100% homebound and there’s no ‘dragging’ myself to meetings. It’s not because it’s ‘unpleasant’. I cannot even leave the house for doctor appointments. It’s not a matter of will – it’s a physical impossibility now.

I get that it’s hard to understand, but some conditions are literal physical barriers, not mental ones. And it’s also hard to understand, but no amount of philosophical ‘engaging with the universe’ can overcome the physical torment of a degenerative disease. That’s very hard to understand if you’ve always been healthy, because it’s too far outside your paradigm.

I honestly appreciate your advice, and I really wish what you’re saying could help, but I didn’t just slide into this mentality because I hadn’t already tried all that. (eta: I tried everything I could to not give up my career – it was my calling and what gave me purpose; everything from counselling to support groups to alternative medicine to weird diets, to therapies and even psychedelic drugs to reset my nervous system.) I’ve always been a fighter, I meditate a lot, and I’ve tried all the things. I’ve actively looked for solutions this whole time. Some problems are bigger than that, and our society is currently actively against people in my situation.

Thank you, but the fact that I’m still here is my biggest problem right now, and I’m not yet willing to fix that part.

[–] Angelusz@lemmy.world 7 points 18 hours ago (1 children)

I see you. Sucks to be in your body, I hope you find your way to peace, whichever path that might be.

[–] LillyPip@lemmy.ca 4 points 18 hours ago (1 children)

OK KITTEN TIME IT'S KITTEN TIME

[–] crawancon@lemm.ee 4 points 17 hours ago (1 children)

I apologize, I didn't mean to infer you hadn't thought of those things.

tbh I was just grasping at straws of help because your situation is not good and your response was hard to digest (the bleakness of it all ). I'm sorry you're home bound now. I've seen people fight I've seen people give up, I've seen some waste away. I'm somewhere in the middle.

my main stance, for better or worse, has been "nothing really matters".

best wishes for you tomorrow and then each day you're with us.

[–] LillyPip@lemmy.ca 3 points 16 hours ago

No apology needed. I really do appreciate your advice, and I didn’t mean to imply otherwise. There’s a point where there’s no real solution, but that’s really hard to accept, even vicariously.

I’m always open to a hail mary (in the football sense, not the catholic sense).

[–] MTK@lemmy.world 2 points 14 hours ago

I'm very sorry to hear that, I hope that what I'm about to say does not feel like I'm minimizing your past and current efforts.

I know of some charities that help disabled people that are home-bound get to important things like the doctor, support groups, etc. Maybe there is one in your city? Maybe you can contact them?

In any case I'm truly sorry that you had to go through all of this, and im sorry I cannot provide any real help.

I don't believe suicide to be the way, but I don't think those who commit it are at fault, life is far from perfect and very far from fair. I hope you do find a way to improve your quality of life.

And as an internet stranger, if there is something I can do, please feel free to DM me ❤️