Chronic pain and illness my whole life. The world is broken

[jupiterwinds]

I've been severely chronically ill and disabled my whole life but it's gotten way worse the last few years. It seems like anything I do makes it worse or gives horrible side effects, including medical treatments. I was misdiagnosed with anxiety disorder (though I do probably have that in some way too plus OCD, depression, and also autistic) and it all being psychosomatic until I got closer to the truth with a fibro dx and finally, last year, EDS along with POTS, MCAS, SFN, all of that. I'm in terrible pain and fatigue 24/7. No one cares or believes how bad it is. I've been gaslit and dismissed, even with diagnoses now. I used to be able to freelance to make some money but I just can't process or navigate it anymore. Things feel foggy and I never know when I'll be coherent. Clients and jobs don't like that. I'm totally dependent on abusive people to survive. I don't qualify for gov support right now.

Not looking for any advice, please, it's a big trigger for me. I have seen a million doctors and tried so many things that I mostly didn't tolerate or made me worse. I'm in illness communities where I can ask those questions. I really want to be somewhere that I can talk about what I think is a reasonable plan to have in terms of not doing this at all anymore. I'm in my 30s and so, so tired. I've been isolating in an emotional DV situation for over 2 years because EDS and my illnesses make me high risk for long-COVID and the last thing I need is to be more sick forever.

The world is fucked. No one cares about disabled people, COVID, climate crisis. I see society collapsing and everyone, even my friends and family, are out partying. I lost my last remaining support, my mom, recently after she lied to me about having COVID for weeks after telling everyone else and now won't apologize or make accommodations for me to live with her safely and not get sick. I'm pretty sure she's in a cult and she's not who she used to be. My partner can be emotionally abusive but he's still my main support and the one way I survive financially besides crumbs from my parents that I have to beg for and get abused to get. Everything is so messed up and the pandemic has taken away any remaining moments of joy and it's clearly never ending. I miss bookstores and the beach and seeing my friends. I have no future in this society. I'm so tired of survival mode, especially when I know that if people cared more about me, about illness and disability, I could be a lot less sick and certainly in a better financial and living situation. But that's not going to happen.

I would like to connect with people who can relate because that does actually help me feel less alone.

 

[FuneralCry]

That sounds so horrible what you have to endure. I'm sorry that you suffer so unbearably, this life is just so unfair. To me it is awful how our bodies are capable of torturing us so much. I hope that you find relief from your pain in whatever happens.

 

[whitefeather]

I've been severely chronically ill and disabled my whole life but it's gotten way worse the last few years. It seems like anything I do makes it worse or gives horrible side effects, including medical treatments. I was misdiagnosed with anxiety disorder (though I do probably have that in some way too plus OCD, depression, and also autistic) and it all being psychosomatic until I got closer to the truth with a fibro dx and finally, last year, EDS along with POTS, MCAS, SFN, all of that. I'm in terrible pain and fatigue 24/7. No one cares or believes how bad it is. I've been gaslit and dismissed, even with diagnoses now. I used to be able to freelance to make some money but I just can't process or navigate it anymore. Things feel foggy and I never know when I'll be coherent. Clients and jobs don't like that. I'm totally dependent on abusive people to survive. I don't qualify for gov support right now.

Not looking for any advice, please, it's a big trigger for me. I have seen a million doctors and tried so many things that I mostly didn't tolerate or made me worse. I'm in illness communities where I can ask those questions. I really want to be somewhere that I can talk about what I think is a reasonable plan to have in terms of not doing this at all anymore. I'm in my 30s and so, so tired. I've been isolating in an emotional DV situation for over 2 years because EDS and my illnesses make me high risk for long-COVID and the last thing I need is to be more sick forever.

The world is fucked. No one cares about disabled people, COVID, climate crisis. I see society collapsing and everyone, even my friends and family, are out partying. I lost my last remaining support, my mom, recently after she lied to me about having COVID for weeks after telling everyone else and now won't apologize or make accommodations for me to live with her safely and not get sick. I'm pretty sure she's in a cult and she's not who she used to be. My partner can be emotionally abusive but he's still my main support and the one way I survive financially besides crumbs from my parents that I have to beg for and get abused to get. Everything is so messed up and the pandemic has taken away any remaining moments of joy and it's clearly never ending. I miss bookstores and the beach and seeing my friends. I have no future in this society. I'm so tired of survival mode, especially when I know that if people cared more about me, about illness and disability, I could be a lot less sick and certainly in a better financial and living situation. But that's not going to happen.

I would like to connect with people who can relate because that does actually help me feel less alone.

Tried to PM you. When you've posted 6 x , then people can PM you . Can you PM me ? https://www.forbes.com/sites/willia...pus-findings-may-help-research-on-long-covid/

 

[jupiterwinds]

I wanted to add that it's also so frustrating because my conditions have been shown to be more painful than what people with cancer experience but I'm denied palliative care or pain meds because I'm not (in any obvious way) terminally ill, though my conditions impact lifespan. Pain meds are also stigmatized so I can't even ask about them without doctors thinking I'm "drug seeking" and denying it outright. It's not fair. It's torture and no one cares. AND on top of that, I'm not allowed to talk about wanting to die, and if I do, I risk police showing up and/or being forced into psych incarceration. Been there, done that. Mental health services are traumatizing and can't treat chronic illness so it just makes things worse and at this point would probably give me COVID too. So I'm in horrible pain, I'm not allowed to get appropriate treatment or talk about suicide.

Tried to PM you. When you've posted 6 x , then people can PM you . Can you PM me ? https://www.forbes.com/sites/willia...pus-findings-may-help-research-on-long-covid/

If it's to share research, I'm not really interested. I know they're doing research but it's way too little, too late. I know people with my conditions getting long-COVID and suffering even more than they were. It's not clear they'll figure any of this out and have little motivation to. Again, not looking for advice or reassurance. Even without long-COVID I'm horribly ill. I came here in hopes of not getting the usual responses with people trying to reassure me with stuff that doesn't do that.

 

[ChiseHatori]

I'm not sure yet if it's okay to reply to old threads, but I just want to say I'm in a very similar situation to you (uncannily similar dx and living situations) and I understand your pain. I can at the very least say you aren't alone and there's a lot of us out here, struggling. I hope you're doing well today.

 

[Lavander 230]

Even though I don't suffer a chronic pain as you are, I definitely had it for at least 2 weeks, and trust me, during that time all i wanted to do was to be under narcosis until I get better. The pain was so unbearable I honestly didn't care if someone was to kill me (I really wish someone did). Are you still there with us?