Applying for Disability Benefits Wasn’t Easy, but I Did It

Amy Baker avatar

by Amy Baker |

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I will never forget the day I applied for Social Security Disability Insurance. I remember sitting at my computer, willing myself to fill out the lengthy application.

Growing up, it was instilled in me to work hard for what I wanted and never accept a handout. So, as I read through the requirements, shame washed over my body. My cheeks burned from embarrassment. Despite the effects of scleroderma, I was still able to use all of my working parts. How could I possibly apply for disability?

Yet, I had exhausted all of my sick days at work, and was now using my vacation days not for fun, but for when I couldn’t get out of bed. Although I had once prided myself on being a reliable employee, I no longer was. My body seemed to hate me, and it let me know I was at its mercy.

Things pile up

Every night, as I crawled into bed, I felt depleted by the day. The exhaustion was profound, like no other, and my body was riddled with pain. Every day was a new adventure as I learned how to keep on keepin’ on. My body wanted to give up, but I willed it to keep going. And it did, for a bit.

But the laundry started to pile up — even more than usual, which is saying something. I wanted to complete all of my tasks at work and my chores at home, but my body said, “Nope, choose one or the other.” As time went on, I couldn’t even finish one task. My body had betrayed me.

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My employer was understanding, but they still had a business to run. After falling asleep several times in the office bathroom, I knew I was in trouble.

Who falls asleep with their head against the bathroom stall? This girl! It wasn’t my best moment. While I had always been in control of my body, it was clear now that I no longer was.

With a heavy heart and an uncertain future, I resigned from my job, wondering what would become of me. Without a title and a job, what did I really have? Those days turned into weeks, and the weeks turned into months.

Then, my doctor suggested I apply for disability.

What?

Me, apply for disability? I don’t think so, kemosabe. I got this!

In fact, I did not have this (insert Morgan Freeman’s voice).

Third time’s a charm

I had been on the fence about applying for disability benefits. As I reviewed the Social Security’s Blue Book, I realized I had multiple diagnoses that would fall under different categories. Would each condition be enough on its own for me to qualify? I didn’t know.

Nope, I couldn’t do it. I had worked most of my adult life, and often had more than one job to support my children and myself. While working two jobs, I also went to college part time and maintained a 4.0 GPA. I had a plan for my life, and being disabled wasn’t part of it.

As I sat in front of the computer, I perused the checklist for the disability application. Whoa, I’d need some time to get everything together. I read that many people retain a disability attorney while applying, but I chose not to because I didn’t want to pay a fee. I wiped the tears from my face and started clicking away on my computer.

Several hours and lots of clicking later, I submitted my application. I was certain I’d be approved. How could I not be? My condition wasn’t going to get better. It is lifelong and has no cure. And to add insult to injury, the diagnoses kept coming.

After a few months, I got my letter in the mail. Denied.

Are you kidding me? What’s a girl got to do to be approved? So, I applied again. Six months later, I was denied again.

I decided to give the process one last shot, even though I thought I’d never be approved and wanted to throw in the towel. I received a notice for the third phase of the approval process: It was trial time.

A hearing to discuss my case was held virtually due to COVID-19 restrictions, which meant no actual court appearance. This was in my favor, as I felt terrible that day. Plus, I wasn’t optimistic, because my application had been denied twice already.

Seven days later, I received a notice in the mail. With shaking hands, I tore into the envelope from the judge’s office. Tears filled my eyes. I couldn’t believe it. Thanks to all of my hard work, I had finally been approved.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Godfrey Henneghan avatar

Godfrey Henneghan

Congrats on the SS Benefits

I answered an ad on FB regarding legal representation for SS Disability benefits. I did not think that SS would grant my request... I simply listed all of my underlying conditions such as venous ulcers on my legs, ankles, feet and toes.. I listed high blood pressure, dysphasia, GURD, Chronic Kidney diseases, Raynaud's on my fingers and toes, chronic fatigue, tendernitis on my left shoulder and arthritis in my knees. With legal representation they granted my claim without any appeals.. I think having lawyers helped. However, I provided SSA with all the medical records.

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Gracie M Miner avatar

Gracie M Miner

I'm so glad that your hard work pay off. Now you and girls can enjoy happiness. Take care scleroderma warrior.

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Donna M Kajfasz avatar

Donna M Kajfasz

As I read this my eyes filled with tears, I know exactly what Amy went through. After fighting to get back to work because a doctor told me I would never work again after an illness I had battled, I had to prove them wrong, so I worked my tail off to get back to work, it took 15 months of long term disability to become strong enough to go back, but after 3 years my health had taken a terrible turn. I finally had NO choice, but to quit my job and move to a place with better health care and get the diagnosis of Systemic Scleroderma. I applied for SSDI and was denied. I then hired an attorney and after one year was deemed disabled. I would rather work honestly, but I know my disease prevents me from doing that, so I am glad I did what I needed to do for my own health.

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sandy jayko avatar

sandy jayko

how many years have you known you have had Scleroderma ? what was the main reason why you cant work if you don't mind me asking ? I know using my hands is really painful but I have only had it a few years. I don't really know how long it takes for the disease to get worse ?

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