I Dread Questions About My Career as Someone With Scleroderma

“What do you do for a living?”

Ahh, one of the most common questions asked upon meeting new people. I dread this moment. Do I tell them what I used to do? I was a marketing director, recruiter, and human resource machine. All of those titles sound decent. So, which one should I pick?

You may be wondering why I am looking to my previous employment. The truth is, I am embarrassed. I shall call myself a disabled domestic goddess. Sounds fancy, right? It should. I made it up to make myself feel better.

My disability is entirely internal. I look “normal” on the outside. There are no telltale signs that anything is wrong. So, telling someone I am on social security disability benefits will inevitably bring up my scleroderma diagnosis, because I feel I have to justify why I’m on disability. Logically, I know I don’t need to explain anything to anyone, but this is when people give me a strange look.

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Having an “invisible” disability can create additional challenges. Many people automatically assume we are lazy. They may make snide remarks about us staying home and doing nothing all day, which is the furthest thing from the truth.

Between the barrage of specialists, labs, tests, and keeping up with the proper medicine, having a chronic illness like scleroderma can be a full-time job. And this job doesn’t pay well. When I was a working professional, I didn’t mind having other duties, because I was getting paid. I’m not sure what I’m getting out of all of this hard work.

Wait — yes, I do. I am doing my best to prolong my life and find meaning in my new, strange existence.

It is incredible how many people can be so judgmental toward those with invisible disabilities. I want to scream and shout from the rooftops, but I silence myself with a smile and the understanding that these people will not be empathetic toward someone who doesn’t fit their idea of what a disabled person should look like.

It is frustrating and soul-sucking at times. Nevertheless, I try to educate those around me about scleroderma and the many other autoimmune diseases that have invaded my body. At this point, I could add “internet doctor and keyboard warrior” next to my title of disabled domestic goddess.

There is a common misconception that people who receive disability benefits are lazy and taking from the system. I am far from lazy unless my body demands I be that day. As a side note, I paid into the system all the years I worked my full-time and part-time jobs.

Applying for disability is a supreme, gut-wrenching challenge. My mother had always told me that if you can work, you work. I lived that sentiment. No one was going to give me a handout.

Trying to work full time and be a full-time patient seems near impossible. Most employers expect you to be present and make up your time if you aren’t at work. I understand and respect the business piece of this puzzle. However, I never wanted to be a full-time patient.

In my 20s and 30s, I was working toward becoming financially successful with a prominent position in some company by my 40s. Now, here I am living on a fixed income. But I am grateful to have it. It’s a double-edged sword.

I would prefer to be working and making far more money than I currently receive. I also miss the rush of a sale or the exhilaration of solving a problem at work. Many people have work besties, and I miss the companionship of my colleagues. Who else likes to ask what’s for lunch at approximately 8:45 a.m.?

All these emotions run through me when I think about my career, or lack of one. When my peers achieve success, I feel furious — not with them but my body. I don’t begrudge their success. I resent my body and its limitations, but I am grateful for everything I can do. Talk about conflicting emotions!

Life is an odd journey. I lost my ability to work in an office and pursue my former dreams. However, I always wanted to write, and here I am writing. Funny how things can work out when you start accepting and adapting.

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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.