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Disability: Acceptance, Fight, and Fear

Last updated: December 2021

In late 2017, I was hospitalized with pneumocystis pneumonia (PCP). This is when we found out that I was HIV-positive. I originally only had a CD4 count of 5, which moved up to 35 before I was dismissed from the hospital.

This led to a new world for me, which included dealing with social security disability.

Applying for social security disability

I attempted to go back to work after my hospital recovery. The challenge was intense. It did not help that I had frequent doctor appointments.

At that time, HIV/AIDS was another health issue for me, not the only one. I had so many doctor appointments for monitoring, testing, and follow-ups.

On top of this, I would get sick so easily because other people would come into the office sick. All of this led to my company letting me go.

Initial acceptance of my application

Due to my company letting me go, I was able to file for unemployment. After I filed for unemployment, I started working on the application for social security disability.

While I led the application with my newly found status, I included my other health issues. These health conditions ranged from endometriosis, chronic migraine, PTSD, and other conditions. My disability was approved.

It has been about 3.5 years and now they want to withdraw my benefits.

Starting the appeal fight for my benefits

I received a letter saying my benefits would end in December. According to the letter from social security, they only analyzed my HIV status.

Due to my adherence to antiviral medication, my CD4 count has improved. While that part of my health has improved, I am still in no position to work.

I am putting my reconsideration appeal together and stressing myself out at the same time. The lawyers that I have contacted are only interested in brand new SSD appeals because they get a percentage of the back owed lump sum. So, I am on my own to figure this out and it's scary.

Fear of my disability ending

The possibility of my disability ending has me terrified. I know that I am not fit enough to return to work. Whenever I am around people, I always end up sick. I cannot be around my nieces without getting sick.

Aside from my weak immune system, my conditions such as endometriosis and fibromyalgia cause constant pain.

What if my appeal is denied?

My insurance year-to-date payments are extreme - both for medical and prescription costs.

I also worry about how I will manage to live if my reconsideration appeal is denied. There are additional reconsideration appeal levels, such as a hearing, Appeals Council review, and a Federal Court Review.

But without my disability payment, how do I make it through the other appeal levels?

The stress of a disability denial

The stress that I have been dealing with around this disability denial has contributed to an increase in my daily pain levels.

I also feel like my depression is building up as well. I find myself wishing that the people behind the social security department could understand the effect they have on the individuals that they review.

Have you had any experiences with social security disability?

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