Editor’s Note: In Lisa Goodman-Helfand’s debut article for her column “Comfortable in My Thick Skin,” she tells her own scleroderma diagnosis story. Her experience with the disease began at age 10, when little was understood about scleroderma. Read about the start of her journey here.
We’ve all experienced pivotal moments that are forever seared into our memory. Anyone who has received a devastating diagnosis can most likely remember the moment their world stopped spinning. They can tell you what the room smelled like, how their heart sank into their chest, and throat closed up to stifle sobs. Most can pinpoint that snapshot in time when nothing would ever be the same again.
I remember the four words delivered to my mother that irrevocably changed my life: “Your daughter has scleroderma.” I didn’t feel as if the world was crashing down on me, nor did I start to cry. I had never heard the word scleroderma before, and yet somehow I instinctively blurted out, “Yeah, so is that why I can’t make a fist?”
To this day, I have no idea how I immediately associated the foreign term scleroderma with my inability to make a fist. My own pediatrician, who had cared for me since birth, had not suspected scleroderma. He hadn’t expressed concern when I showed him the painful ulcers that were forming on my fingertips. Even the dermatologist we saw misdiagnosed me. He told my mother that these painful calcification deposits on my digits were warts. For two years, he would freeze off these “warts” while I howled in agonizing pain. For two years, this doctor reprimanded me for my “ridiculous melodramatic” reaction to a simple procedure. He also told me that my “warts” were spreading because I wasn’t washing my hands properly.
By sheer circumstance, my mother took me to a different dermatologist one Friday afternoon. The new dermatologist, whom I had just met, held my hands for 10 seconds, looked at my mom, and diagnosed me with this rare autoimmune disease.
After the term scleroderma fell from his mouth, my life as an ordinary 10-year-old girl ended. With those four words came a shift in my identity. I would, from then on, be known as Lisa Goodman — the girl who looks different, the girl who is sick, the girl others worry about touching because she’s probably contagious.
Shortly after the visit with the diagnosing dermatologist, we had an appointment with an esteemed children’s rheumatologist at one of the premier children’s hospitals in the country. I was examined by a team of doctors and then asked to step out into the waiting room while the doctors privately spoke with my mom and stepdad.
I happily leafed through the latest edition of Highlights magazine for quite a while until I saw my mom walking toward me. Was she crying? From a distance, it looked like my mom was crying, but I must have been mistaken because by the time she reached me she was smiling. “Guess what?” she said in a cheery voice. “You and I are going to spend a few nights at the hospital together so the doctors can run some tests. Come on, I’ll take you shopping for a pair of new pajamas!”
Life is full of split-second choices. In that moment, my mom made the decision to provide me with as few details as possible about scleroderma. It was a choice that both she and I have questioned many times in the last 20 years. For better or worse, I spent the remainder of my childhood thinking that scleroderma just meant tight skin. Of course, my mom never could have shielded me from the truth in today’s world. But my diagnosis came in 1985, long before the days of Google. Nearly a decade passed before I realized that my mom had indeed been crying that day. It took me even longer to fully grasp why she had been crying.
Every journey to diagnosis and path to acceptance is unique. Mine spans moer than three decades, and I hope it will continue to unfold for decades to come. So how did I transform from that clueless 10-year-old girl to a 42-year-old woman who has faced the brink of death more than once?
My story is just one among the hundreds of thousands of scleroderma stories. It’s a story of self-love and self-loathing, rejection and acceptance, resilience and surrender, triumph and disappointment…
In case you’re confused, this is not a hijacked excerpt from a soap opera commercial (maybe that dermatologist was right when he told me I was melodramatic). In a nutshell, this is a story of how I literally and metaphorically came to be comfortable in my thick skin. I’m honored to be able to share a piece of my story here with my readers each week.
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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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