How a scleroderma diagnosis changed my purpose in life
Two decades of living with the disease have led to impassioned advocacy
Scleroderma is a disease that takes no prisoners. Not only does it attack the body and its vital organs, but it also causes the body to fight itself, wreaking havoc on skin cells, tissue, and the defense mechanisms that fight illnesses.
I think of it as scleroderma befriending you, allowing your body to trust it, and then one day — bam! — it conducts a hostile takeover, and you have no way of fighting it off.
After I was diagnosed in 2001, I spent the better part of four years searching for answers to the whys and whats floating around in my head: Why me? Why now? What did I do to deserve this?
I was panic-stricken about the unknown. Obsessing over questions seemingly without answers and searching for knowledge led me down a path of enlightenment, courage, and purpose.
Learning to lead through lived experiences
I was 31 the first time I met someone else with scleroderma. Actually, I met two people, sisters who were diagnosed several years apart. They were outgoing and fun and didn’t allow their illness to dampen their spirits. I envied them for that important trait. Being carefree was a concept I’d lost touch with the day the doctor spoke those three words to me: “You have scleroderma.” And just like that, I became part of a broader community. I wasn’t alone anymore.
As the years went by, I became more knowledgeable and outspoken about scleroderma. I met hundreds of people who were living their lives as I was. They weren’t simply trying to get by, but rather thriving by speaking out about their experiences, all to help others. For the first time in my life, I started to understand what bravery and selflessness are. These people put their own pain aside to lift up others who were lost and seeking a purpose.
My life began to change. I started to understand that it wasn’t up to doctors or research clinicians to share our experiences; it was up to us to stand up, speak out, and cultivate change. I had to be a part of that revolution.
Stepping up to find my purpose
I started to join every organization I could find that was focused on scleroderma. I founded a young adult’s Facebook page geared toward connecting patients. I worked hard to be named to the boards of various nonprofits dedicated to research, support, and clinical intervention.
It took five years, but I finally created a space for young adults to connect, support, and educate others. It was something new for the scleroderma community.
Lastly, I began traveling around the country to educate others about scleroderma.
This disease, which scared the heck out of me and my family, has become the single greatest factor in my life. It’s caused me not only to be a better human being to others, but also to create a purpose for myself I never knew I needed. I’ve found strength as an advocate, and that has helped me find my true self. Symptom by symptom, scleroderma has carved out an identity for me.
What now?
Twenty-two years after my diagnosis, I still haven’t discovered all of the answers to the whys, whats, and how-comes. I have more questions now than I did on day one of my diagnosis. But I also believe that most things happen for a reason.
What’s next for this scleroderma advocate and crusader? I’m not sure, but I know that my life’s story is still being written every day — and every time I share my experiences with you.
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.
About the Author
Comments
Terri L. Thomas
Thank you for sharing your experience! I was first diagnosed in 2017. Everything really unraveled for me during the winter of 2020 when I flared very badly. Like you I have been trying to learn as much as I can about Scleroderma. I have found that many doctors do not know much about Scleroderma. It almost seems like I have to educate them about Scleroderma and some of them don't take kindly to that. I have even looked into antibiotic treatment. I saw a new dermatologist who stood there without ever examining my skin and tell me that I did not have Scleroderma despite the evident blood work and organ involvement. I left that appointment in tears and was not sure what to do next. I am now blessed to have a wonderful rheumatologist who is doing all she can to help me and refers me to doctors (as you know we need many) who are familiar with Scleroderma. After reading your article, I will be writing a letter to the organization that the dermatologist works for in hopes to educate him and their organization about Scleroderma. Thank you again for sharing. Maybe I need to advocate and educate those in my community!
Debbie
Glad to see another newsletter from you! It seems a long time since one turned up in my email and I appreciate your continued contributions.
Wishing you Joy,
Debbie
Dianna Richard
In 2017 I was diagnosed with scleroderma and I am still learning about this condition and I have had a real tough time emotionally. The first rheumatologist I saw was a female who lacked conveying any compassion. I no longer see this physician. My current physician is more knowledgeable and has a better bedside approach. I have inquired about support groups in the city I live in but haven’t found any. My husband is very supportive but sometimes I really feel all alone
johnny
Thank you for sharing your experience. You have provided some reason to keep on living. It took quite awhile to get to a diagnosis with me. Almost a year of poking and prodding with multiple blood tests. Depression is always a factor in the big mix of symptoms. It was a rheumatologist that finally diagnosed me. The variant of scleroderma i have is sclerodactyly which affects my hands more. Thanks again Amy.
Maggie Gould
Thank you for sharing your story, this disease is very difficult to deal with alone. My hands are now painful can playing the piano is difficult now (I am a musician) just wonder if anything can slow the pain and hand joint stiffening down.
Lori
My journey started when I was about 48. My hands started to swell and was hard to move the joints-they felt stiff. Went to a Rheumatologist and she found nothing wrong. Rolled on with life until one day when I was about 61, I was so short of breath and lethargic. My PCP referred me to a Rheumatologist when my labs showed severe anemia. He also referred me to a GI Dr. GI Dr found my stomach was leaking blood-he said he could actually see stomach lining loosing drops of blood-he had never seen that before. He called it "watermelon stomach" or GAVE. So, great I will have to monitor this closely. Next the Rheumatologist ran a battery of labs and said I have systemic sclerosis. I have been a nurse for 40 yrs at that point and had never even heard of this diagnosis. She started me on a drug called CellCept which is an immunosuppressant. Noticed skin was more flexible and was feeling better. Until that drug threw my heart for a loop and started arrhythmias. So, now I am seeing a Cardiologist to get my blood pressure back under control. I have the most trouble with my hands with Raynaud's and painful swollen joints. Also, last year started having calcinosis on my elbows and arms. Right skin was broken on the elbow by the large amount of calcinosis. Had 3 surgeries for the removal of all that, the last one had to be done by a plastic surgeon who specializes in arms. I was very grateful he was able to fix it without a skin graft. I am not a vain person but the deep wrinkles around my mouth is so noticeable because those are the only wrinkles i have....I don't even have any gray hair. Sometimes it is hard to talk because it seems to be getting tighter. It is also affecting my kidneys. And have learned it is better not to say I will be at a family function or whatever , because that day I may have a flare up of some sort. So, I say that I will have to see if I can make it. So, this long I know. Many will not read it all. But, it feels so good to type all this. Thank you so much for this forum! I don't feel as alone right now.