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When Chronic Illness Impacts Your Career

It is hard to believe that it has been 24 years since I was diagnosed with scleroderma. I probably don’t even remember clearly what my life was like prior to my diagnosis. What I do remember is I had long term goals planned out that I pushed myself to try to accomplish to the very end. I always had the mindset that working hard and building on my savings account would eventually allow me to travel around the world, as well as become a homeowner. Despite my diagnosis and the challenges that came as my illness progressed, I hung on to my dreams until the very last moment I could. Disappointingly, I neither have traveled around the world nor am I a homeowner.

Scleroderma is a progressive autoimmune disease affecting the skin, connective tissues and internal organs. My immune system has caused my body to make too much of the protein, collagen, resulting in thick and tight skin on my face and throughout my body. It has also created scars formed in my lungs and heart. Scleroderma is a debilitating disease that has taken a toll on my physical and mental well-being.

After my diagnosis, I continued life as usual. I ignored any discomfort that came my way. I graduated from the Fashion Institute of Technology with great eagerness to begin a career in the Fashion Industry. For 17 years, I carried on with my responsibilities as a member of the production team to various companies, excelling, while silently living with a monstrous disease that made everything difficult.

I am still in awe of how I never shared with or talked to anybody on the job about my struggles. During those years on the job, I dealt with acid reflux attacks, painfully numb fingers, infected sores on my fingers and soles of my feet and chronic fatigue. In addition, I used lunch time to run to doctors’ appointments. I would save my allowed sick time to use when I couldn’t go to the office due to my symptoms. I worked at home in the evenings to either catch up if I had an unproductive day or worked to put myself ahead for the next day in case it turned out to be a dreadful sick day. I struggled with typing when I had sores on my finger, but no one noticed.  While everyone enjoyed the AC blowing in the conference rooms on a summer day, I had painful Raynaud’s attacks that did not allow me to fully focus. With the level of stress that my position entailed, it was a continued battle of keeping my blood pressure down.

Scleroderma progressed throughout my career. However, I felt it was the place where my work was valued, where although I physically struggled, I felt proud of my accomplishments. Scleroderma was invisible at work and nobody questioned me.  I felt a sense of “normality” since nobody asked about my physical appearance. I was lucky to have worked with a team of kind and friendly people. I was able to find joy and laughter in conversations that took me away from my reality.

It was definitely hard. I remember going to the trade shows and having mixed emotions; it was bittersweet. Being selected to attend a trade show was a big thing.  It meant the company trusted me to bring back the new upcoming trends and inspirations back to the office for the rest of the team. It was truly exciting, but it was extremely tiring for me. These trade shows were in large convention spaces. I was short of breath while trying to get from one booth to another. The numerous booklets and samples I had to carry back were pretty heavy for my exhausted pint-size body.

Looking back to those years, I am not sure if I regret my approach. I always thought the disease would limit me and did not want anyone to limit me. Deep down I was also hopeful I would somehow get better. Four years ago, my body just could not keep me working and I had no choice but to let my supervisor know when I resigned. My lung capacity had been dramatically reduced, I had more frequent infected sores, my iron level was depleted and my esophagus had severe inflammation due years of acid reflux. Every health issue had to get the necessary attention.

I am still trying to heal. I am using my savings to pay for expensive medication that the insurance company does not cover, buy products that help me live comfortably and pay medical bills. Everything I dreamed of is on hold. Since the sky is the limit, I am still hopeful I can meet my dreams.

Getty image by Dedy Setyawan