Being disabled is the fucking worst

[littleearthquakes]

Since my last thread got hijacked by unsolicited toxic positivity that further harmed and invalidated me I'm starting a new one and please dear god don't respond to this unless you're just going to hold space or offer support don't tell me to have hope THERE IS NO HOPE I HAVE A DEGENERATIVE ILLNESS WITH EXTREME PERMANENT DAMAGE

I can't walk I can't eat normal food I'm a fucking disabled mess I have no quality of life I should be able to be done with this life but I can't get out and no one cares even my partner invalidates my pain and tells me it's not that bad despite having to take me to the bathroom and bring me my meals and watch me cry in pain every day what the fuck what is this what is this please what is this I have nothing and no one

 

[Passenger4224]

One of the worst parts of it all is seeing people all around you without the disabilities

 

[autistichaven]

Since my last thread got hijacked by unsolicited toxic positivity that further harmed and invalidated me I'm starting a new one and please dear god don't respond to this unless you're just going to hold space or offer support don't tell me to have hope THERE IS NO HOPE I HAVE A DEGENERATIVE ILLNESS WITH EXTREME PERMANENT DAMAGE

I can't walk I can't eat normal food I'm a fucking disabled mess I have no quality of life I should be able to be done with this life but I can't get out and no one cares even my partner invalidates my pain and tells me it's not that bad despite having to take me to the bathroom and bring me my meals and watch me cry in pain every day what the fuck what is this what is this please what is this I have nothing and no one

I'm sorry. I have been in varying levels of disability and it is one of the most terrifying things to lose your autonomy, and I can only imagine how painful it is. That's horrible about your partner, I find it such an injustice that disabled people are treated like this and are not given the financial and social means to survive without relying on sometimes abusive partners and family. I hope that there is a way to find relief one day, it must be hard to find a way out when there is so little autonomy. I understand the dismissive attitudes people have to disability and illness, people say they hope it will get better or they'll pray for you or whatever - as the likely reality is too much for them to handle. I don't think most people know what to say that isn't advice, positive platitudes, or such things. People like to have hope for others, but there are occasions where it is actually not realistic. I'm sad for you, it's deeply painful sounding and I wouldn't wish it on anyone. It's a lonely existence being disabled.

 

[Topaz111]

There is nothing as horrifying as your own body turning against you and failing you.
You can escape abuse, war, poverty, natural disaster, but the only way to escape permanent, incurable disability is death.
It's cope or suicide for us.

 

[StarryEyed]

Hi @littleearthquakes and I hear you. I can only hobble around my apartment now and need mobility devices to go out. I have too have a progressive neurological disorder called sensorimotor peripheral polyneuropathy due to various illnesses and treatments. At some point I may lose my feet. It started in 2011 and it's been just over three years now since I can't walk. I'm absolutely devastated. I hate my life. Everything about my life. Absolutely everything. There are just a few teensie weenie things that bring me relief, but I don't know if they're enough to keep me alive. One of the things is coming here and having people listen and listening to others.

Is there anything we can do? Maybe it might help for you to offload some of your pain here by telling us how your illness got you into this mess and what are your challenges?