Disability Denial: Acceptance and Next Steps

In 2017, I went on social security disability. At the time, I thought my disability was approved due to all my health issues. I would later find out that my disability was only approved based on my HIV/AIDS status.

Accepting my multiple disability appeal denials, using my healthcare benefits while I can, utilizing my connections, working with a career coach, and unpacking my emotions about returning to work has been a journey to say the least. But my situation is, unfortunately, not unique, so if you have found yourself grappling with any or all of those same elements - I hope my experience can be helpful.

Featured Forum

View all responses caret icon

Accepting the disability appeal denial

The Social Security Administration did a review of my disability case and determined that I was able to return to work. I went through the appeals process because, as I mentioned, they were only looking at my viral load and my T cell numbers.

This overlooked all my other chronic health conditions. While I have done everything I could to inform them there is more to my health than the fact that I have a better handle on my HIV.

I appealed their decision, not once, but twice. After the second denial, I have faced the fact that I must come to terms with the reality that they are not going to change their opinions. Even with all my doctors' opinions and letters.

As frustrating as all of this feels, I have to keep moving forward with my life.

Using my health insurance

Once I accepted my second disability appeal denial, I contacted my Medicaid Advantage insurance company to see how long I would have my insurance. The best information I could get from the company was an estimate of 3 months. This means that I had 3 months to use my health insurance to the fullest.

While I am on various medications and see a variety of doctors, it is extremely important that I do not miss any doses of my HIV antiviral medication.

Previously, when I did not know about my HIV status, which meant I was not on the antiviral medication, my T cells dropped so low that I was classified as having AIDs. That is not an experience I ever want to have again.

Featured Forum

View all responses caret icon

Utilizing my connections

My next step was to reach out to my friends and former coworkers or supervisors to see if there were any useful connections that I could build on. I have had a referral from an old coworker of mine and from a supervisor. I am hopeful that these referrals will produce something.

One of my closest friends was more than understanding and willing to help me in any way that she could manage. This included her reaching out to her network of people to see who would have helpful information for me. From her connections, I was able to connect with a career coach who was willing to work with me.

Working with a career coach

Realizing that I would have to start a career search after years of being on disability was extremely intimidating. After the initial consultation, the career coach informed my friend and me that I was in a better position than I thought I was in. This was slightly comforting.

Currently, we are working on some of the technical aspects, such as my resume and learning to write a cover letter. Then we will move on to interview skills, including how I present my experience of being on disability and my hopes for returning to work. It does feel good to know that I have someone on my side who knows what they are doing.

Returning to the workforce and navigating the emotions

I have a lot of emotions to unpack about returning to work. After how sick I became when I was working before my disability, there is a level of fear associated with returning to work.

We all know that some people tend to come to the office when they are not feeling 100 percent. This makes me worry about how often I may become ill due to being around other people's germs. It would be ideal to acquire a remote position, but that may not be an option.

Community Poll

Have you experienced discrimination in the workplace?

I also feel a lot of stress over trying to find a job promptly, since I am not getting any more disability payments. It is very stressful to try to manage my bills and expenses. I am continuing to work with my psychologist while I can so that we can try to manage my emotions and prevent any dark thoughts from taking over.

While this situation is a complex one, I know that I must keep moving forward with my life. If my HIV is truly at a point where I can balance a career and my health, that is an exciting step in the right direction. I have a lot of work in front of me, but with one step at a time, I can accomplish this too.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The H-I-V.net 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.

Community Poll

Have you ever been unhoused or insecurely housed?