Surviving the Existential Dread of Social Security Disability

Alison Hayes applied for Social Security Disability Insurance (SSDI) in 2003 and within 8 months of applying, it was granted. Despite being well-educated, fully aware that she needed the program, and competent about her conditions (Functional Neurological Disorder, with a history of depression and anxiety), Alison spent much of the application process feeling incredibly bad about herself. The entire process was disheartening.

Here’s Alison:

I applied for social security disability insurance (SSDI) at the tender age of 23. 

How it started

What had started as a shiver on a warm day had transformed into violent rocking motions, full-body tremors, urinary urgency, and sudden, jerky, muscle movements for no discernable reason. When I finally found a neurologist who could correctly diagnose me, I hoped that the worst was over. He reassured me that my Functional Neurological Disorder (FND), though very real, wasn’t associated with structural problems in my body.

“Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.”

RareDiseases.org

With support from my therapist, a complete recovery was possible. He also helped me recognize that stress was the primary trigger for my symptoms. I felt reassured and hopeful.

The losses pile on

After losing my second job in three months, I realized my chosen field might no longer fit. Two months after that, my father died suddenly. That was the biggest trauma in my life.

My movement symptoms got even worse. I was having emotional outbursts in between periods of emotional numbness, and of course, my FND symptoms got worse.

It was at that point I realized that I had to apply for disability. Fortunately, my mother was friends with the head of the Division of Disability Services in our state.

The application process

I was encouraged by this person to apply by focusing on detailed descriptions of my disability on my worst days. He warned me that I shouldn’t expect to get benefits for at least a year or so.  

I had a long history of depression and anxiety, so my medical history was long and detailed. Providing all of this was both physically (because of the FND) and emotionally exhausting. Nevertheless, I completed this application and sent it out. I felt relief to finally have finished.

A few weeks later, the next round of paperwork arrived.

I am grateful for my roommate at the time, who was willing to fill out the documentation. Between the practical advice from my connection at the division of Disability Services, support and advice from my therapist, the support of my boyfriend, my roommate, and my mother, I managed to hold myself together enough to fill it all out properly and get it in.

The Emotional Pain of applying

The most painful part of the whole thing was filling out the Activities of Daily Living (ADL) information. This forced me to recognize how limiting my symptoms were – how much I’d changed since this condition entered my life. It made all my losses even more real, amplified them, and left my brain echoing that pain. My sense of self-worth was damaged.

Mentioning things like my resilience, hopes, and recovery plans, would only hurt my case. Instead, I focused on the worst, most painful, most intimate parts of my condition.

Earning my benefits

I was awarded disability later that year.  Success on the first try and getting my first check before the end of that year was very fortunate.  My “onset of disability” date was the month I had applied, so my Medicare wouldn’t kick in for a year. 

It eased my fears and concerns around my finances, but I didn’t feel good about it.  It was confirmation of my failures. Social security agreed with my statements about just how useless and flawed I was. 

The relief of financial freedom was muffled by the emotional toll that applying had taken on me – and I know that I had it relatively easy and had a lot more support than the average person.

Over the years, I’ve reflected on this torturous process, and healed.  Applying for disability forced me to face the realities of my condition, but in a way that really damaged my own belief in myself.  I wish the system didn’t work that way, but that is the current reality.

Sharing what i learned

I’ve made a point of understanding both the process of applying for disability and the forces in the world that were behind many of my doubts, fears, and moments of self-hatred that I experienced while applying, and at times since then.

I’m excited to offer my Practical Guide To Applying For Disability to help others. Considering applying for disability? I can help you understand the application process, how and why it’s likely to impact your mental and emotional health. There are steps you can take to protect yourself and further your healing through the process.


from the editor:

Here are some other sides of Social Security Disability we have looked at:

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