Flower arrangements shaped like ice cream sundaes, new pajamas, stuffed animals, books, bracelets, and countless other trinkets. These are the gifts I remember receiving during the three-day hospital stay that followed my dermatologist’s diagnosis of juvenile scleroderma. But the fun didn’t stop with all the gifts! Oh, no way! My roommate and I raced to see who could go up and down the fastest on our automatic beds, watch television together, and laugh for hours.
Being a 10-year-old hospital patient was like being a rock star! I was the center of attention and doted on by doctors and nurses. It seemed every medical professional wanted to see me. I recall the residents cramming their way into tiny exam rooms just to get a glimpse of my hands. Wow, I must be really special!
It’s strange to reflect on my scleroderma diagnosis through the lens of my 10-year-old self. In 1985, I thought being in the hospital was an absolute blast. Sure, I have vague memories of dozens of tests and procedures, including a painful skin biopsy and a barium swallow that made me vomit. But those moments were a small price to pay for all the ice cream you could eat.
Looking back, I should have been terrified. Questions about why I was in the hospital, what was wrong with me, and what my future held should have been looming over me like a dark cloud. Was I a ridiculously dense child, or was it my mom’s deception that kept the doom and gloom far from my consciousness?
When we were discharged, my mom, faced with a parenting dilemma, turned to me and said, “So … Lisa, all the testing they did shows that you have a skin condition called scleroderma. It’s really not a big deal at all. It just means that your skin is tighter than most people’s. You’re completely fine! This is not something you need to talk about with anyone because you’re fine … you’re just as healthy as anybody else.”
Parenting deception could not last
I did as my mom told me, and barely uttered the word scleroderma over the next two decades. But the well-intended parenting deception could not last. In the years that followed, my arms and legs became disfigured, I developed telangiectasia (red spots from broken capillaries) all over my body, and my skin became restrictively tight. My lips shrunk and my mouth refused to open wide, making trips to the dentist a nightmare. Throbbing ulcers developed on my fingers and elbow that often leaked calcium, or worse, became infected.
Through this devastating physical metamorphosis, I didn’t talk about my disease with anyone. I felt my peers staring, wondering what was wrong with me. I sensed that nobody wanted to hold my weird, bony hand during team games in gym class. I knew I looked different, and that knowledge deteriorated my self-esteem.
Only now, with a 13-year-old son and 10-year-old daughter of my own, can I begin to comprehend my mom’s parenting dilemma and motivation for lying to me about my diagnosis. As an adult, I have ricocheted between gratitude and anger toward my mom and her gross misrepresentation of my autoimmune disease.
How different would my childhood have been if I could have Googled scleroderma right from my hospital bed in 1985? How would my 10-year-old brain have digested all the facts that would have been instantly accessible? It took me decades to cobble together accurate information about scleroderma and understand what it meant in the context of my own life. Today, those answers would be at my fingertips within seconds.
Any parent can tell you that, when faced with unbearable child-rearing challenges, there’s never one clear path to take. Sometimes, I think the best gift I got during that three-day hospital stay wasn’t a stuffed animal or trinket. From time to time, I believe the best gift was the one my mom gave me with her manipulation of the truth. Just as often, I think it was the worst.
To learn more about my journey with scleroderma, visit https://comfortableinmythickskin.com/
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 scleroderma.