Venting I'm so tired of being tired. Chronicles of being a disabled married woman.

[hopelessghost]

I'm tired of the chronic panic that never goes away and the fact that people "get used" to it so quickly, how it's just something you should carry in silence if you don't want to become a burden or "that person who's always negative/down"
I'm tired of the fatigue, of the eating disorder that's in the back of my mind dictating my every move, and I'm tired of feeling like I'm less and less of a woman as each day goes by.
My husband, who used to adore me, now treats me like I'm just his bro and is as romantic as a door handle. Never takes me out to do anything, barely talks to me when we're together, never asks how I'm feeling because he know I'm feeling like shit and probably doesn't feel like hearing about it.
My family pity me for all the pain and the hardships I face everyday, and that by itself makes me feel disgusting.
I can't accept that I'll never get flowers anymore, never have a romantic dinner or a love letter, never have someone looking at me with burning desire (even tho I'm actually very attractive and have a pin-up vintage style that men apparently really love), at least not at home. I have an open marriage (since day 1) but I can't find the will to go out and meet new people, I'm already buried trying to navigate life with a shit ton of work, debt and being disabled in a third world country.
I just feel like my body and mind weren't made to be alive for that long and I'm only 24, it should've probably ended when I tried it but I was only 13 and didn't knew how to do it right. Everytime I think about being alive till I'm 70 or smth, it makes me want to end it all right now.
I can't think of a single reason to stay alive besides the traditional "your family will be destroyed" type shit. Will I ever be alive because I actually enjoy it and want to? Does this shit get any better?

 

[doomedbynarrative]

Been at the disability game for over ten years now. There's moments I can enjoy for a little bit. Overall though... I don't know. It gets worse every year. Love is the only thing that has kept me here. I love a lot of people. Sometimes, if I have it in me to pray to anything or nothing, I pray for all living beings that are disabled that something/someone will rescue all of us someday.

 

[aRose]

You're telling my story huh. My husband became an annoying little brother type when I got sicker. It sucks but when you point it out they say naaaaw no never as if we can't tell things have changed. It's fucked

 

[hopelessghost]

You're telling my story huh. My husband became an annoying little brother type when I got sicker. It sucks but when you point it out they say naaaaw no never as if we can't tell things have changed. It's fucked

That's so fucking true. They talk like it's not a very visible change. Jesus Christ, I'm so tired I don't even point it out anymore, I just gave the fuck up

Been at the disability game for over ten years now. There's moments I can enjoy for a little bit. Overall though... I don't know. It gets worse every year. Love is the only thing that has kept me here. I love a lot of people. Sometimes, if I have it in me to pray to anything or nothing, I pray for all living beings that are disabled that something/someone will rescue all of us someday.

What's your disability if you don't mind me asking?
I have fibromyalgia and autism and I feel like it's getting worse every year too

 

[doomedbynarrative]

What's your disability if you don't mind me asking?
I have fibromyalgia and autism and I feel like it's getting worse every year too

I have MCAS, hypermobility that isn't EDS but still hurts pretty bad on occasion, dry eye disease, and progressive hearing loss with severe reactive tinnitus, AuDHD among other things... I can't say more cause some are a bit unique to me and I don't wanna get doxxed.

 

[hopelessghost]

I have MCAS, hypermobility that isn't EDS but still hurts pretty bad on occasion, dry eye disease, and progressive hearing loss with severe reactive tinnitus, AuDHD among other things... I can't say more cause some are a bit unique to me and I don't wanna get doxxed.

I'm so sorry you're going through that shit as well. I just wish it could disappear for all of us

 

[bigjwang]

You're telling my story huh. My husband became an annoying little brother type when I got sicker. It sucks but when you point it out they say naaaaw no never as if we can't tell things have changed. It's fucked

Yeah I mean the world just keeps going even though we're sick. I don't even blame anyone or anything anymore.

The doctors can only treat what's in their textbook. They're not that smart, just memorized a long flowchart.

People only understand labels they have seen or experienced. Much of the discomfort pain and disability I don't even have words to precisely describe.

It gets worse all the time. And eventually I know I want out I'm just not sure how I'm going to get there.

 

[Dejected 55]

So... not quite your situation... and both of my parents are long dead now... but when they were both alive, my mother in her later years of life had a lot of health issues and was mostly bedridden. My father was her caretaker until he couldn't be anymore. My mother began to resent him and see him differently because of the level of care he had to do for her... he had to change and clean her, for instance, because she could not go to the bathroom on her own. He never complained or made her to feel like he saw her differently, but she saw him differently and it got to the point where not only the stress and physicality of taking care of her wore on him but he was losing the rest of the relationship in the process.

This is different than the situation you describe... and I'm not defending your husband... but in caretaker situations it can be stressful in ways that are not obvious to others. I don't condone men caring for sick or disabled wives who stray from the marriage due to that stress. I hate cheaters anyway, and a man who cheats while his wife is sick appalls me even further... but my point is, changes in the dynamic of a relationship can manifest in unpredictable ways sometimes.

I don't know how people manage on either side of it. The feelings you probably have about yourself now... feelings your husband has... and then assumptions perhaps you both make without talking to each other honestly.

Again, not taking his side here. I'm just saying I've seen this kind of thing before and when a loving partner becomes a caretaker that changes the dynamic.

 

[hopelessghost]

Yeah I mean the world just keeps going even though we're sick. I don't even blame anyone or anything anymore.

The doctors can only treat what's in their textbook. They're not that smart, just memorized a long flowchart.

People only understand labels they have seen or experienced. Much of the discomfort pain and disability I don't even have words to precisely describe.

It gets worse all the time. And eventually I know I want out I'm just not sure how I'm going to get there.

Exactly. And I'm writing this on the subway, coming home from my 9-5 job feeling such a ridiculous amount of pain. It just won't get any better I guess.
The thinner I am the more my body hurts and I can feel my bones against chairs etc. I'm such a mess

So... not quite your situation... and both of my parents are long dead now... but when they were both alive, my mother in her later years of life had a lot of health issues and was mostly bedridden. My father was her caretaker until he couldn't be anymore. My mother began to resent him and see him differently because of the level of care he had to do for her... he had to change and clean her, for instance, because she could not go to the bathroom on her own. He never complained or made her to feel like he saw her differently, but she saw him differently and it got to the point where not only the stress and physicality of taking care of her wore on him but he was losing the rest of the relationship in the process.

This is different than the situation you describe... and I'm not defending your husband... but in caretaker situations it can be stressful in ways that are not obvious to others. I don't condone men caring for sick or disabled wives who stray from the marriage due to that stress. I hate cheaters anyway, and a man who cheats while his wife is sick appalls me even further... but my point is, changes in the dynamic of a relationship can manifest in unpredictable ways sometimes.

I don't know how people manage on either side of it. The feelings you probably have about yourself now... feelings your husband has... and then assumptions perhaps you both make without talking to each other honestly.

Again, not taking his side here. I'm just saying I've seen this kind of thing before and when a loving partner becomes a caretaker that changes the dynamic.

I know it's hard for him and honestly I understand it. I'm too much of a problem and he shouldn't be carrying this burden.
But the problem with him never being romantic was here before my sickness was this active, so it's not like he has changed due to it. He just doesn't have a single romantic bone in his body.
Or maybe I just don't deserve it anyway, just don't make him feel like that.

 

[Dejected 55]

I know it's hard for him and honestly I understand it. I'm too much of a problem and he shouldn't be carrying this burden.
But the problem with him never being romantic was here before my sickness was this active, so it's not like he has changed due to it. He just doesn't have a single romantic bone in his body.
Or maybe I just don't deserve it anyway, just don't make him feel like that.

I'm sorry. I definitely didn't aim to make you feel bad by what I was posting. Was just pointing out that it might not be him being less attracted to you and might just be the shift in responsibility due to your illness.

But, if it existed before your illness then that's a different conversation... I forgot you said you had an open relationship, right? I know sometimes open relationships can run into roadblocks if one partner finds someone they like more than expected and perhaps more than their otherwise partner. Is it possible something like that happened with him and he hasn't voiced it? I don't know if that would make it better or worse... but maybe it would make you feel like it was less about you or your illness and it was more about him?

I don't know. I read my words that are meant to help you find answers, and I fear I might be making you feel worse inadvertently.

 

[hopelessghost]

I'm sorry. I definitely didn't aim to make you feel bad by what I was posting. Was just pointing out that it might not be him being less attracted to you and might just be the shift in responsibility due to your illness.

But, if it existed before your illness then that's a different conversation... I forgot you said you had an open relationship, right? I know sometimes open relationships can run into roadblocks if one partner finds someone they like more than expected and perhaps more than their otherwise partner. Is it possible something like that happened with him and he hasn't voiced it? I don't know if that would make it better or worse... but maybe it would make you feel like it was less about you or your illness and it was more about him?

I don't know. I read my words that are meant to help you find answers, and I fear I might be making you feel worse inadvertently.

That's fine I know you didn't mean it like that, it's just thoughts that are already way too deep in my head for years...
Btw we do have an open marriage but neither of us are seeing anyone (or even getting out of the house if it's not for work) bc we're both working too much and still having no money so yeah probably the problem is just me after all.

 

[Dejected 55]

That's fine I know you didn't mean it like that, it's just thoughts that are already way too deep in my head for years...
Btw we do have an open marriage but neither of us are seeing anyone (or even getting out of the house if it's not for work) bc we're both working too much and still having no money so yeah probably the problem is just me after all.

I am still sorry. I didn't mean to contribute, even inadvertently, to your pain. From everything you've said, though, I sincerely do not believe you are in any way at fault here. It is possible even your husband isn't at fault and it's just a thing that happens sometimes where two people (or at least one of them) grows apart over time. There are lots of scenarios where it's completely benign that one partner just starts to pull away and it isn't about one of them doing something wrong.

I know none of that really helps... I can only discourage you from piling onto everything you're feeling with blaming yourself.

 

[hopelessghost]

I am still sorry. I didn't mean to contribute, even inadvertently, to your pain. From everything you've said, though, I sincerely do not believe you are in any way at fault here. It is possible even your husband isn't at fault and it's just a thing that happens sometimes where two people (or at least one of them) grows apart over time. There are lots of scenarios where it's completely benign that one partner just starts to pull away and it isn't about one of them doing something wrong.

I know none of that really helps... I can only discourage you from piling onto everything you're feeling with blaming yourself.

I think it's not even that we're "growing apart" bc we really love each other, but the way we show love and feel loved is very very different.
I always try to make him feel loved in the ways that actually work for him, but I don't know if he's capable of doing the same tho bc my "love languages", if that's even a thing, require more effort to him I guess

 

[Dejected 55]

I think it's not even that we're "growing apart" bc we really love each other, but the way we show love and feel loved is very very different.
I always try to make him feel loved in the ways that actually work for him, but I don't know if he's capable of doing the same tho bc my "love languages", if that's even a thing, require more effort to him I guess

That's a different kind of conversation then. People certainly can have incompatible love languages, especially if one partner is either unwilling or unable to show affection in the way that you need to see it. It can be as complicated as purposeful or uncaring or mean... or it can be as simple as just being incompatible. Sometimes we don't even know what our love languages are until we aren't getting it.

Speaking for myself... never having been in a relationship, I like to think I know what I need from a partner... but I can't be sure. I'd need a partner who wasn't fulfilling me in some way before I would know what I was missing from her. I can only guess at the moment. I think even with relationship experience we might not know fully what we need until we have gotten it and then been deprived of it... if that makes sense.

I do think communication and effort are keys, though. Partners have to be able to ask for what they need so their partner has a fair shot at giving... and then each partner has to be willing to put in the effort to give what your partner needs from you.