Social Security Disability provides people who are chronically sick a certain degree of freedom, but in a sense they also become trapped on SSDI. The income limits on SSDI (and Supplemental Security Income for that matter) are such that patients cannot live on the income that would disqualify them for the coverage.
I’ve been living with multiple chronic illnesses for over six years now. It got to a point during the first few years where it was obvious things weren’t going to get better for a while, and I wasn’t able to “keep up” anymore. I was going to my local hospital for IV infusions three days a week, and struggling to make ends meet at my job. It was at this point that I applied for disability.
Being on disability helped me function. I worked when I could and bills got paid. I was very lucky that my job allowed me to work an unconventional schedule. It was still hard to make ends meet, I didn’t have much money, but I was able live without killing myself working.
Time to try to grow
With a great medical team, some luck and a lot of hard work, in the last few years I’ve been able to find more stability in my life with chronic illness. I always had a part time job while I was sick, but I decided that I wanted to try to find something more – less for money and more for personal growth.
I was really excited and happy for my new venture when I started another part time job. But I knew that meant change was on the horizon.
I want to preface this by saying my level of health stability does not mean the chronic illness is gone. It still effects my life considerably. It merely means I’ve been able to achieve a balance, and found ways to live alongside my illnesses; at least for now.
How Social Security Disability Allowed me to live
One thing disability provided me was safety. With chronic illness, it seems like you’re always waiting for the other shoe to drop. Sometimes it does, and you become very ill again; enough to where you may be hospitalized and unable to work. Whenever this happened, I knew my bills would still get paid and I would have a life I could return to after. It allowed me some breathing room to fight my illnesses and not constantly worry about finances.
How I feel trapped on SSDI
I make too much per month currently according to disability guidelines in New York State. $880 is considered “too much” in gross wages earned for hours worked in a month. When you make too much for too long, you become ineligible for monetary aid.
A monthly wage of $880 ($10,560 annually) is too much. The federal poverty level in 2019 for one person is $12,490 or $1040 a month. There is a disconnect there.
$880 is not a livable wage, and this is where I have a problem with how the system treats people like me. I consider myself “functionally disabled”; meaning I still deal and live with my illnesses, but I’m able to function well enough to work. In between working hours, I still have very regular doctor appointments to go to which require time both in a car, and at the doctor’s office, and a daily life to live. Some days I’m still too sick to do anything except survive. Occasionally, bad days turn into bad weeks. When that happens there is no money coming in, bills are unpaid, food is not purchased, and medications are put on hold.
With my insurance, each doctor visit is $75. Add to that whatever my medications cost in a month, plus cost of gas to get back and forth to the appt, plus the cost of bloodwork or testing required, PLUS the loss of hours at work. Medicare requires me to see my specialists every three months. I have 5 specialists. So that’s 5 specialists x $75 each + transportation for each + bloodwork (most of them get bloodwork). Then add my monthly medication costs…carry the 5…add the… I’m broke.
The problem of social security income
I don’t have an answer to this problem. We get lost in the guidelines because people like me are much easier to ignore than to help. Our lives, our illnesses, everything about us is different from that next case ahead of us, and from that case you just saw before ours. We need that time and attention, but we’re not getting it. We deserve better.
Samantha “Sam” Smith is a Health & Wellness Coach and the President for G-PACT, a non-profit patient support 
group for Gastroparesis. She was born, raised and still lives in upstate New York where, in the warmer weather she loves to run. Sam has organized fundraisers, lobbied congress, and been part of many awareness campaigns for chronic disease awareness.
From the Editor:
If you have found this article interesting you may want to read,
“Disabled America – Claim Your Seat at the Table” by Cienna Ditri, which includes an important survey
Or if you want to read more of the writing by Samantha Smith try,
“Exposing the Fairytale of American Medicine” or “Rare Disease Patients, You Must Make Yourselves Heard“.
Finally, here is a good resource from Bankrate.com on how disabled people can find savings (reviewed and approved by Jim Sliney Jr).