I Measure Success and Self-worth Differently With Scleroderma

How do you measure success and self-worth?

It may be a simple question for some, but for those who suffer from chronic autoimmune diseases such as scleroderma, the answer often becomes quite complex.

Like many other adults, I used to measure my success and self-worth by my title and income. It went well for a while. I made a name for myself as a corporate regional marketing director. Building relationships in the community was critical, and I relished getting to know people from all over the state. I wasn’t required to be in an office every day, as my car was my rolling office.

I didn’t make a six-figure salary, but I made enough to take care of myself and my son. My compensation plan included a monthly bonus structure, cellphone allowance, and many other outstanding executive incentives. The position required I work more than 40 hours a week, but I was an executive. I’d never been in that position before, and I must admit, it was pretty cool.

My job allowed me to start later to take my son to school in the morning. It was during this time in 2016 that I began to experience scleroderma symptoms. Fatigue would wash over me with a vengeance unlike anything I had previously experienced.

I clearly remember the day I knew something wasn’t right. I dropped my son off at school that morning. Though we lived less than 10 minutes away, I couldn’t make it home. Fatigue pulled me under its crashing wave. It was winning.

No longer able to drive, I pulled over at a gas station. Less than five minutes from my home, I closed my eyes and slept. I woke up about 30 minutes later, disoriented. I made my way home while still shaking off the cobwebs from my impromptu nap.

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Fast-forward five years: Instead of the rock star I’d envisioned, I am now a professional patient. My reality is not how I thought my life would turn out.

Over the last five years, I’ve struggled to find my self-worth and label anything I do a success. With a chronic autoimmune disease, mental health can be a big, long roller coaster.

I had to mourn the ideas I had for my life. Down the hill of the roller coaster I went.

I had to become my own health advocate and would occasionally get a “W” in the win column. Back up the hill I went.

I have continued to ride this roller coaster since my diagnosis.

I still actively mourn and miss the old me, and would be remiss if I didn’t say that my self-worth has taken a huge hit. I find myself fighting back tears when others tell me about their accomplishments. However, I am truly happy for them.

I want to celebrate their achievements, but how do I do this when I want so desperately to have something for others to celebrate?

Guilt overwhelms me when I feel this way, making me question who I’ve become. It’s isolating to feel like I’ve lost my self-worth. Many chronic illness patients struggle with this debilitating experience.

One thing I can tell you without uncertainty is that you have worth. You matter. You will always be vitally important.

I struggle with that to this day. You are not alone in your feelings. I am guilty of wondering why my life has turned out like this when I see so many of my peers living their best lives. Jealousy and sadness take over.

Just when I think I have it together, I start going through the five stages of grief. I often restart this process when I receive an additional diagnosis. Acceptance is the most complicated stage for me. I accept my new reality, but I still fight it. I still try to live my life like I used to so I can feel some semblance of normalcy. However, my body always brings me back to reality.

My new normal is not what I wanted, and I don’t always understand it, but it’s mine.

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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.