Hi, I have Hypermobile Ehlers Danlos Syndrome and some of the health problems it has caused is photophobia, severe eye strain, and numerous hand problems and pain. I was unfortunately disabled before I could work, and in USA, that means I only can get Supplemental Security Income (SSI), instead of the Social Security Disability Income (SSDI).
SSI is a needs based program and only pays out the maximum of $736/month if you are homeless or paying an "equal share" of rent, otherwise the maximum you get is $514. I am getting $514 because I am at my mother's and even $736 is barely enough to rent a room where I am (Washington State).
SSDI requires work credits to get on (1 credit = $1,410 of net income and only 2 credits can be earned in a year) and I have found that I have to work at least five years before I qualify.
I have no idea how to do this with my vast collection of symptoms from my illnesses. Menial labor is out, due to joint problems and fatigue. Computer work is very difficult with my eye and hand problems. Because of the unpredictability of my illness, I would not be able to adhere to any kind of work schedule another person sets for me. The photophobia prevents me from working under fluorescent lighting. I then determined I would be limited to a multifaceted home business that would allow me to rotate activities to compensate for the limited time I am able to do anything before I am in too much pain.
Furthermore, my living situation is bad and my mother is a hoarder--i do not even have my own room and what space I have is pretty much full. I'm on housing lists, but the waits are years long, up to a decade. If I move to a place where you can live on $514 with a systems wide, incurable illness that many doctors do not understand, I will lose the network of doctors I have created over many years. Most places with that affordability also have a climate my body will fail in and do not have good healthcare. I am very stuck.
What do those of you with photophobia and/or EDS do for work?