I honestly don't know where to start with my story, so I will start by saying that this is the first time I ever written and shared my story publicly and it is all thanks to my lovely soul mate. He has encouraged me because he truly cares and loves me.
It's been twenty years of a battle with the unknown. I am twenty-six and I have linear scleroderma, and I have been reminded of it every single day for twenty years. I was diagnosed with it when I was about eight or nine. It started when I was six, but for several years the doctors had no idea what was wrong with me. Those two years were a nonstop trip to all the dermatologists my parents managed to find. Most of the doctors were sincere in trying to help me, but they didn't have a clue what was wrong with me until one of them mentioned a doctor in Poland, and said that we should contact her.
My parents did so, and after a short while we traveled to Poland and saw her. Right away she knew what I had, as she specialized in this area, which relieved me and my parents. And so the journey of pain and suffering began, not only physical but also mental.
I will not write my story as a timeline because I managed to block out and disorient a few times on events related to my sickness. I am extremely nervous in writing this. Having a disease that people have no idea about is very challenging, to both the patient and the people around them, especially if it is internal and external.
My linear scleroderma is located on my right leg, from the foot all the way to the end of my thigh. That was very challenging and depressing to deal with (frankly, it still is). I used to ride horses since I was about five, and after the diagnosis and knowing all the dangers, I had to quit riding because the least amount of friction would leave me wounded and in extreme pain. I couldn't wear anything that is short because I used to scare people away.
I guess one of the hardest parts of having this disease is feeling the need to cover it. I resorted to wearing baggy jeans almost all the time, because one leg is thinner than the other. As if it wasn't enough having to live with this, people sometimes noticed and they would bluntly ask, "Why is one leg thinner than the other?" or, "Why don't you ever wear short dresses, or shorts on the beach?"
All these questions left me with pain and emptiness that nothing could fill. Even the honest answer would never make me feel good for even a second. I live my life not caring what people thought about me, except when it came to my condition I was always scared of how people will react. I see how people react for example to someone with a tiny scar from a wound, and I would try to imagine how they would react if they saw my whole leg with all these scars and discolorations.
I had friends for over six years who never even caught a glimpse of it. Yes, they know about it, but it's just so hard to share it visually with people. Ignorance is bliss, but in my case and people who share my case, ignorance hurts us! Sometimes it gets easier but sometimes it just takes over me and I get so depressed that I cry for days. I can't talk about my condition without crying my eyes out!
Sometimes I would just lock myself in my room and do nothing but stare at my leg, or just sit there for hours thinking about how draining it is to struggle with this. I have never sought professional psychological help to ease the process, but my parents and close family members were there for me more than I could have asked for. They were always encouraging me and trying their best to keep up with the doctors and to see if there were any treatments that could help.
I have also had friends who were very supportive and understanding even though they never fully understood my condition. And my boyfriend is beyond loving, thoughtful and accepting of it, which makes it easier to cope with.
The internal struggle is very tough, because I worry about many things, trying to lead a normal life while being very cautious about everything around me because one cut could lead to more than just bleeding and one bump can leave me bruised for weeks. Waking up everyday wondering if I am going to get better or worse and how? Finally, I reached a little amount of inner peace when I thought, "This is part of who I am. I am who I am today because of this and I am content and happy with the person I am."
I also tell myself that maybe the cure for this disease will also be unknown like the cause. I have never met another person with linear scleroderma. To others with linear scleroderma, I just want to say that we are not any different. We are all human. This was not our choice, but it is our choice to lead a normal happy life. Bless all of you. I hope you never lose the strength to fight this!
To the people who read this, I might not know you, but it helps to know you took the time to read my story. I hope my story helps at least one person out there.
Email: [email protected]
Story edited 01-25-11 SLE
Story posted 01-25-11 SLE
Story Artist: Shelley Ensz
Causes of Scleroderma
Juvenile Scleroderma Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.