What to Expect During a Disability Hearing (In America)

My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents from Social Security that might explain what to do if you did not receive their phone call at the scheduled time.

My disability hearing was scheduled on the hour, and the extra 20 minutes that passed without word had my stomach churning.

I sighed in relief and picked up the phone. I’d been waiting for this moment for almost 2 years. The process of receiving disability funds has been long and arduous. I would have given up on filing a long time ago if it hadn’t been my last option.

Collecting and sending written documentation

Most of the work I had completed towards Social Security in the past was paperwork-related. I had the responsibility of collecting all of my records from my various doctors' offices. This included notes from my mental health providers, sleep specialists, and more. Other paperwork was simple to fill out and mail in.

Thus, my biggest hurdle was adjusting to communicating my symptoms verbally.

I was nervous about verbally explaining my narcolepsy symptoms

I typically struggle to communicate my symptoms to even my doctors. I was especially nervous about communicating with individuals who might be hearing about narcolepsy for the first time.

Or, possibly even worse, whose only exposure to narcolepsy before my hearing might be watching inaccurate media portrayals of narcolepsy that are becoming increasingly popular. Thinking about all of this made my head spin.

Providing mental health notes

Studies evaluating patients with narcolepsy have concluded that up to 57 percent also suffer from depression.¹

Not everyone with narcolepsy needs to provide mental health notes for their case. Those whose mental health impacts one or more life activities might find it important to do so.

I find it important to mention that one thing to consider is that personal therapy notes might be used in questioning. I was not aware of this, and I think it was because of that reason that I found myself getting caught off guard.

I have experience with being invalidated by medical doctors and other professionals. I am sure that many people with narcolepsy have experienced similar circumstances. I would have appreciated a heads-up on this point, just so I had time to prepare myself mentally.

The waiting game

Unfortunately, it will be months before I hear any news back about the results of my hearing. This brings me to my next point, which is that news often takes longer than one might expect when pursuing Social Security disability benefits.

I’ve been working tirelessly on this for approximately 2 years. Sometimes it feels like a second child. It is difficult to consider what might become of me if I am not able to get access to Medicare and disability funds through supplemental security income (SSI).

When I outgrow my parents’ insurance at age 26, I am not sure what I will do. However, I try to release it to the universe. I will continue to try my hardest to provide for myself and my service dog, whatever the outcome is.

In the words of Eleanor Roosevelt, “No one can make you feel inferior without your consent.”

Have you applied for Social Security disability? What have you experienced? Share your story or drop a question in the comment section below.