Social Security Disability: Overwhelming Situation

I have been on social security disability since I received my HIV/AIDs diagnosis. When I was working, my employers felt as though I had too many medical appointments and that my medications affected my performance. I struggled to make it through the workday due to chronic pain and chronic fatigue.

Therefore, shortly after my first infectious disease appointment outside of the hospital, I followed their advice and stopped working.


The Social Security Administration recently reviewed my case and decided that I am no longer disabled. I feel like the only factor that they considered was my T-Cell count. Due to medication adherence, my T-Cell count is now over 200! I still have to deal with HIV-related problems such as headaches, insomnia, involuntary weight changes, nausea, night sweats, severe fatigue, and vomiting.

Additionally, I have more issues than just HIV/AIDs. My health concerns include intractable chronic migraine, chronic fatigue syndrome, fibromyalgia, endometriosis, PCOS, IBS, and several mental health concerns. There is much more to consider about my health than my T-Cell count.

Appeals but benefits, please

I have two doctors who do not think I should work. This is why I want to appeal their decision. They are going against my doctors. Unfortunately, the Social Security Administration believes I should be able to work for whatever reason.

I am trying to start the process of appealing their decision. While I submitted everything needed to request my disability benefits to be continued, this paperwork must be reviewed by somebody within the Social Security Administration.

Benefit's check

While waiting for their decision about my benefits continuation, I was left without the monthly income I was receiving. While I was mentally prepared not to receive next month's benefits, they even stopped this month's check. They have also set my Medicare insurance coverage to end come the 30th of November.

Health insurance coverage

I am surprised that they finalized removing benefits so quickly. Even if I can find a job to suffer through, most employers have new employees work for three months before offering health insurance. How am I supposed to survive without all my medical stuff for 3 months or more and without health insurance coverage?

Lawyer or advocate

For this appeal, I really feel like I need some assistance. I have been trying to find a lawyer or an advocacy group willing to assist with my appeal. If my benefits are continued, then the law firms want a retainer that is 2,000 dollars or more. They also require a payment of 100 dollars or more each month that they work on my case.

If I do not have my benefits check, they will drop the retainer and take a percentage of the back benefits payments if the appeal case is won. They still require the 100-dollar-a-month fee, though.

I have yet to hear back from any of the advocacy groups. I also applied for legal assistance from a pro bono legal group called Lone Star Legal Aid. So, I am waiting to see if they can help me. At this point, I am waiting. I am waiting to see who can help me and if my benefits continuation is approved.

Have you dealt with the Social Security Administration for disability benefits? If so, feel free to share your story! I would love to hear from you.

By providing your email address, you are agreeing to our Privacy Policy and Terms of Use.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.