I Dread Questions About My Career as Someone With Scleroderma

Amy Baker avatar

by Amy Baker |

Share this article:

Share article via email
Main graphic for column titled

“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.

Recommended Reading
peripheral nerve damage/sclerodermanews.com/peripheral neuropathy within 10 years

Peripheral Nerve Damage Common Within First 10 Years, Review Finds

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.

***

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

Christel Goetsch avatar

Christel Goetsch

Well said! I had to leave my beloved nursing job almost 16 years ago at the age of 46. It was one of the most depressing times of my life. I do appreciate qualifying for Social Security Disability right off the bat, but I’d much rather be actively working for my paychecks…. Although many comments people make about my situation are not meant to be offensive, my first reaction (even after all these years) is to feel “guilty” and somewhat defensive!!

Christel

Reply
Angela Buncik avatar

Angela Buncik

I loved the true story about what we deal with. I work in retail and they do expect allot out of you too. I've got some great coworkers at the store that know of my scleroderma and treat me like a regular person. They also understand when I can't work as fast as the next person but I still surprise them when I can process just as fast as the person who doesn't have what I have. That makes me very happy. My dream job used to be a florist but my hands wouldn't allow me to do now but I do allot of plant tending with our flowers in the back yard when there in season.

Reply
Brad Nascimento avatar

Brad Nascimento

well i can say this. when i get a deep cut ,at least i never need stitches ,it just clots up,.All that thick skin i have.Just Amazing.😉

Reply
freida Roers avatar

freida Roers

I live in Ontario can. and find that the doctors here are not used to dealing with scleroderma at all. It took them 7 years to diagnose mine and it was found by a surgeon by accident. I have had it for at least 23 years and have not received treatment for it in any way.I wish I was closer to the Mayoa Clinic.

Reply
Jo Ferrante avatar

Jo Ferrante

Wonderful article - thank you for writing it and for all of your other articles.
I'm wondering if you will be writing about the shortage of Actemra. I was just hit with the news that not only are my infusions of Actemra cancelled because there is a shortage due to the medication being given to hospitalized Covid-19 patients, the injections of Actemra now prescribed for me (not approved for Covid patients) will cost $1,173.59 monthly. I can't afford it. I am 65 and was diagnosed a few years back with Limited Scleroderma (CREST). I try to always stay positive - but I find it maddening that people with rare diseases seem not to matter sometimes...

Reply
Rhonda jessup avatar

Rhonda jessup

I went to the Mayo Clinic and even they did not catch
That I had scleroderma. Several years later it was my dermatologist that diagnosed

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.