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What It Felt Like to Finally Be Seen as 'Disabled' After Years of Trying to Get Disability

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Over the past month or so, I have gone through some major changes. Although  they aren’t physical, they affect not only how I see myself, but how other people see me. In a way, these changes shouldn’t have come as a surprise. I fought for over two years to get disability, trying everything I could.

Then finally, I was “awarded” the title of disabled.

This was a word I spent my whole life fighting against. I told myself that I was just like everyone else, and I could do all the things my peers could do. Unless it was running a mile, climbing more than a flight of stairs, and have a period without bleeding out within 90 minutes, meaning I went home early at least once a month.

Looking back, it’s apparent more was wrong. When puberty hit, and hit hard, my body started to change — more than growing hair and developing a large chest. I would later be told what it was: KT. These two simple letters changed my world. Klippel-Trenaunay syndrome (KTS) is a vascular abnormality causing one side of the body to bigger than the other. In most cases, it only affects the lower limb. Since I am rare, even in the rare community, I’m affected from head to toe. My left size is currently an 18 and the right is around a size 5. It also affects the length of my bones. When I was 12, my growth plate in my left knee was scraped off, making P.E out of the question.  I ended up being the girl on the field watching everyone else play.

My friends were amazing though; they had my back and never treated me with kid gloves. I graduated, went to college, but I always felt stalled — like my dreams and interests didn’t line up with what my body could handle. What was I going to do with an art history degree, when I wasn’t able to walk around a gallery or museum? My dream job was to be an archeologist in Egypt, but overheating at the drop of a hat ended that dream.

A girl needs to pay her bills, so I went to work as a caregiver. Between the arthritis in my back and a habit of vomiting at work, I needed to look elsewhere. I also applied for disability for the first time. Going through the motions, my case was denied.

Knowing I have a heart for helping people, I decided to try going to school for dental assisting. A nice cold office would be great for my heat temperament, but apparently not under a lab coat. I passed out on more than one occasion. Since I have been dealing with the fainting for years, I knew the signs well enough to cover my symptoms. During this time, I also applied for disability again. I was denied again under the argument that if I could handle school, I should be able to work.

So work I did. I worked until my back felt like it was breaking, sweating so much that my carefully applied makeup melted off. A pattern was emerging, no matter how well I did in the interview or try outs, I could not find work. That’s when I decided to try for disability, but with help. I found a law firm in Santa Monica, went in and pled my case. I was told how long it would take to get a hearing, years. I agreed, and pieces started falling into place.

I was sent to doctors who did tests, diagnosing and documenting my injuries. I continued to do my best at any employment I was given. I drove over 75 miles for interviews only to be told how great I was and never being asked for a second interview.

I knew my case was legitimate; I wasn’t someone looking for a handout. I wanted to work, so I tried to find jobs that could work around my disabilities. When I finally received the letter telling me I would have a hearing and meet with an actual person, I was so relieved.

Now that I officially have the title of “disabled,” its shocking to see how you are looked at by most of society. I recently went through an airport in a wheelchair, and boy, did I get some looks, even when asking about pre-boarding. When going to some of the stores, I noticed I was the one fighting the wheelchair, telling my friends that I could walk.

I realized after that trip that I am a disabled person, and there is nothing wrong with it.

If you are upset that I get to park closer, I apologize, but I think I have passed out in enough stores to know how many steps I can walk before I need a break.

Some people think being disabled means I sit at home, lying on my couch eating bonbons waiting for a check I didn’t “earn.”

Well believe me, if I had the choice between chronic pain, depression and everything else, or being healthy enough to go to work five days a week, I would much rather work.

I don’t want you to feel sorry for me, I just want people to understand this is the path God put before me, and all I can do is walk by faith.

Originally published: August 13, 2018
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