Growing Through the Difficulty: My Life With Scleroderma

I was four years old the first time I heard the word scleroderma. I didn’t know then that it would become a word that shaped every chapter of my life. What I remember most was the skin tightening, the arthritis, GERD, fatigue, and endless trips to Boston from Vermont for doctors’ appointments. Suddenly, my world had gotten smaller. I didn’t understand why my hands and feet hurt when I tried to play, why I had to take so many medications, or why so much of my childhood was spent in hospital rooms instead of on playgrounds.

What I did understand was that my doctors were fighting hard for me, and I had to fight too. I learned resilience before I even understood the word. 

I missed a lot of school and often felt invisible, except when I was being bullied. I looked different, and I was often swollen from the steroids. My parents tried to juggle it all. Taking care of my siblings and me. I felt that my siblings resented me because I was getting so much attention. My parents started to use a respite care service. Four hours a day, 4 days a week, someone came and took me away. I had a place that was just mine and people who gave me special attention. But as a child, I didn’t understand the bigger picture. I didn’t understand that my parents were trying to balance the needs of the entire family. All I knew was that I was being taken away while the rest of my family stayed home. In my mind, they were making

memories without me.

I learned to be strong. My parents would involve me in my medical decisions, so I learned to advocate for myself early on. Adolescence brought new challenges. Every teenager is learning to love themselves, but it's even more complicated when your body doesn't cooperate. I threw myself into sports, and my parents never held me back. 

I just wanted to be normal, but scleroderma never really took a break. Gradually, through many high school achievements, I stopped seeing myself as broken and started seeing myself as different and stronger than most. 

One of my most pivotal moments came in 9th-grade science class. Each student had to pick a disease to write a report about and present to the class. I chose ME and my scleroderma! I stood on top of my teacher's desk, dressed in only a pair of shorts and a sports bra. I let the kids see the morphia all over my body. Let them touch my misshapen foot and scars. It was the scariest thing I have ever done. For the first time, people weren’t whispering about me. They were SEEING ME. My teacher asked me to present in all of her classes, and other teachers even stopped by to learn from me. I was a decorated singer and athlete, and now everyone could see what I was dealing with. They learned that I wasn’t a scary monster, just a human with some differences. 

On the days I felt heavy, I leaned on creativity, humor, or quiet strength. On the days my spirit felt heavy, I let myself cry- and then I got up to try again. 

I struggled again when I turned 18 and lost health insurance. For the next four years, I went without regular care or medication, relying on emergency room visits just to get by. Scleroderma kept me from landing a full-time job with benefits. I tried cosmetology school, but after finishing, I realized that my body wasn’t going to let me realize this dream. I got married and became a mom. Now covered by insurance, I could get back to my specialists and my much-needed medications. Looking back, I should have applied for Medicaid sooner. I just didn’t know that was an option!

If you’re transitioning from pediatric to adult care:

• Stay on your parents’ insurance as long as possible.

• Start researching coverage well before you turn 26.

• Confirm that your specialists are in network.

• Ask your pediatric care team for help navigating the transition.

Now, decades later, I've grown into a deeper appreciation of what it means to live with scleroderma. I have thrown myself into the scleroderma community as an advocate and support group leader. After a lifetime of feeling different, I found people who truly understood the journey. I’ve lost most family support, and this amazing scleroderma community has been there for me time and time again. Now I have caregivers come to my home to help me with all my daily tasks through palliative care. My case manager is a doctor who coordinates my care between specialists, primary care, pharmacy, and even hospital stays. I simply have to call the office and ask. This is completely covered by Medicaid. I wish I had called sooner!

I was told by doctors I wouldn't live past age 15. Well, I’ll be 41 in May. I will keep fighting and surviving, because it's all I've ever known how to do. Scleroderma has shaped me, but it hasn't defined me. I continue to dream, to love, to grow, to support, to advocate, all while carrying this awful burden with strength and grace. I have been able to find meaning in every setback, and hope that my story can inspire someone else to keep going, too.

Living with scleroderma isn’t just about surviving the disease. It’s about growing through the difficulty and finding light anyway.

Tiffany is a single mom, scleroderma advocate, support group leader, and tireless volunteer in the scleroderma community. Known for her generosity and empathy, she spends hours connecting with patients, often simply listening and reminding them they are not alone. She also runs a small clothing and accessories side business and uses her voice to raise awareness and support others living with scleroderma.