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chronicallyillbill

New Member
Jul 21, 2025
1
I'm new to this site so excuse any format or other mistakes I make.
Hi, I'm Billie. I have a genetic disorder (hEDS) and many comorbid conditions that come along with it. Chronic pain (in all joints and muscles) and fatigue are my most debilitating symptoms. I also have dysautonomia, pelvic organ prolapse, and other hard to manage conditions and symptoms. I'm also autistic and have cPTSD. I have experienced chronic suicidal ideation since I was around 8 years old.
I live in the U.S. and i applied for SSI (government disability benefits).
I went before a judge and have been waiting two months for a decision. I got it in the mail today.
Denied.
And just like that my hopes are shattered. I may be able to appeal again but at that level the approval rate is about 2% so I have no hope that will work out.
Frankly I don't know what to do. I struggle to survive off of state assistance (food stamps and a very small amount of cash) and its possible that will get taken away because of the denial. I live with a parent who struggles to keep a roof over our heads.
I could apply for citizenship of my other parents home country and live there, living with/supported by my extended family. But I would be leaving my other parent and their family behind, and my friends, as well as my whole medical team. I spent 10 years begging doctors to listen to me and I finally found competent providers. The medical system in the U.S. is broken and for profit, but the country I would be moving to has a lack of specialists who know how to treat hEDS. I have heard horror stories of people not being believed until they die of hEDS in that country.
Suicide sings to me like a siren. The pain would be over. The physical pain, the mental pain. I would no longer be a financial burden on anyone.
There are things that keep me from committing.
I'm an only child and it would kill my parents.
I don't want to risk an attempt not being successful and having to live with long term physical consequences of whatever method I use.
And I still find beauty in the small things. Animals, reading a good book, becoming obsessed with a piece of media (og fangirl here), creating art, eating a tasty meal, taking a picture of a pretty sunset.
But these things on the 'cons' list don't outweigh the things on the 'pros' list when it comes to suicide.
I don't know what i'm looking to gain by posting this. Maybe just the act of writing it down and getting it out of my head is enough.
Thank you to anyone who took their time to read this <3
 
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thelazyegg

thelazyegg

Member
Mar 25, 2024
49
Thank you for sharing and being vulnerable! I also have hEDS and it's true hell. I'm having a long lasting pain flare up that's affecting my whole body and it makes me suicidal because the pain is just so bad. I get it and I'm so sorry you're going through the pain of hEDS and also the pain of overwhelm at life's difficulties. It's understandable why you're here posting. Sending hugs if you like them.
 
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behindtheveil

Member
Oct 12, 2025
260
Lots of blessings and loads of love to you. I really hope some miracle does happen for you and everyone reading this. Take care.
Lots of blessings and loads of love to you. I really hope some miracle does happen for you and everyone reading this. Take care.
 
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frommetoyou

frommetoyou

bored
Feb 18, 2026
8
the US healthcare system is absolutely horrible. im so sorry you were denied. they never want to offer any assistance to the people who actually need it, i completely understand the hopelessness that brings. it's so hard dealing with life, and with a body that only brings you more pain, its a harmful cycle that you only want to end. i hope that they wont revoke anything from you for getting denied.
life still has beautiful things that we can enjoy, but they feel so fleeting. i hope things become less tense for you. welcome to SaSu, i hope you can find some comfort with us <3
 
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locked*n*loaded

locked*n*loaded

Archangel
Apr 15, 2022
9,528
I'm sorry you're going through all this. It must be maddening for you. Did you have an attorney? I don't claim to understand your circumstances and all that, but I do know that my neighbor received disability a few months ago, first try, and his only condition is Emphysema, at least that's all he told me.
 
tomatopotato475

tomatopotato475

I will be squashed one of these days
Jan 20, 2026
19
This is why i wish assisted suicide in the U.S was legal and practiced and everywhere else because whether you are on life support or not, if you have a life long chronic condition that gives you pain and discomfort that right there should be the qualifying factor. But for some reason our healthcare system only cares to keep you coming back for money
 
muu

muu

If I was gone, If I had just disappeared
Jul 27, 2025
128
hello, i am in a similar position to you!

formally diagnosed with POTS, but i have been suspected of having hEDS since my diagnosis. i have a lot of the comorbid conditions. i'm telling you all of this because i want you to know you're not alone, especially on sasu. lots of us have chronic illnesses, both mental and physical.

i think the worst part about chronic illness in the way that i (and maybe you) have it is that we live a mostly normal childhood and then we start to get sicker, and sicker. and sicker. i was a healthy child until about the age of 13 where i started having symptoms and 14 when i got diagnosed with POTS. i'm 18 now and it's a lot, lot worse. when you lived like that, it's easy to remember what it was like to feel okay and symptom free and then you realize that you're stuck in this accursed body that doesn't even want to be alive, it seems. the dichotomy hurts, it would sap away the will to live from any rational human being i believe.

the healthcare system fucking sucks. it alone makes me want to die. getting disability is also absurdly hard. you're very strong for trying for it.

i see you're very hesitant about choosing suicide, and i think if you have a reason to stay, you should exhaust that before considering anything serious. even the slightest hesitance is a sign that you should use your logical brain, in my personal opinion. of course i cannot sway you one way or the other, but i just felt i should mention this, as you talked about the things you enjoy as well as your parents... i'd say enjoy them until the tap runs dry for that.