What I Am Reminded of Every Scleroderma Awareness Month

As we have seen another summer go by, I can’t help but wonder, how is it I have seen 18 “June months” while living with systemic scleroderma? For those of you who are not familiar, June is Scleroderma Awareness Month: an entire month dedicated to spreading awareness, education, and support for patients, caregivers, medical professionals, family and friends. I feel honored to have been able to see 18 Scleroderma Awareness Months in my lifetime thus far, but I always tend to think of the less fortunate individuals who have lost their battle with this complicated and debilitating disease.

Why have I been so lucky to have witnessed 18 Awareness months in June, and so many others have maybe not even seen one? What makes me so special or so different/lucky? Then there is also the question of do I deserve the 18 months of June, and what am I doing to honor that gift?

I was diagnosed 18 years ago with systemic scleroderma, in 2001 to be exact. Scleroderma is a fairly rare autoimmune disease that effects the skin, muscles, joints, blood vessels and connective tissues in the body by thickening and stiffening them. It can also cause thickening and stiffness in the major organs like the heart, lungs and kidneys. It is a disease with an unknown origin and no known cure thus far (fingers crossed).

Living the past 18 years with scleroderma and all of the life debilitating complications that come with it, I have learned that being a professional patient must come first in my life, but it isn’t necessarily the only part of my life. I needed to have a full life and to be able to feel like I wasn’t just someone living to die.

So I came up with a list, not so much a bucket list but a “living wish list” of all of the things I wanted to accomplish while living with scleroderma, not in spite of it. With that list intact, I set off to start my journey of living with scleroderma and making my days important to me, in my own way. Slowly, but surely, I began to check things off of my wish list and each time I did, I added one or two more items. Then, at the end of each year, I would take a look at that list and see all of my accomplishments and think about all of the goals I still had on my list left to be completed. It wasn’t until two years ago that I started to think about why I was doing these things, and what my list really meant in the grand scheme of things.

I had started an online support group with the help and support of the Scleroderma Foundation, called the Scleroderma Super Starz. I started the group because I wanted a place where young adults and teens living with scleroderma could go to feel safe to ask questions, vent their stress, find support and meet other like individuals. The group really took off, and after only a few months, I had over 1,000 members from all over the world.

I started to realize that the group was a much needed outlet for the youth living with scleroderma, and that there could be other ways to help reach the younger community and evoke change. So I started to go to colleges and health fairs and speak about my journey living with scleroderma as a young teen, how it impacted my life and how the younger generation of this community needs to have a voice. Along the way, I started to meet all of these really amazing men, women and children living with scleroderma. Some were quite sick, and others not as much. Some needed oxygen to breath or needed a wheelchair to get around like me. Others could jog and climb stairs and do yoga. We were all very different, but inside we were all dealing with the same disease.

Friendships were formed quickly, but the bound was definitely strong. We were part of a special club that required you to have a rare autoimmune disease to be a member for life. I was really glad to have met and befriended so many fellow fighters like myself. It helps to have someone to reach out to when you’re having a hard day or a stubborn symptom that won’t quit. I found it reassuring to be able to reach out to my tribe and vent or receive advice for problems no one else really has but us. Everything seemed great: my support group took off with 2,500 members after only two years. My speaking engagements were becoming a constant and recurring opportunity. I was seeing change in my life and in the scleroderma community as a whole — change for the greater good, and that made me feel accomplished and proud.

Then like the shock of cold water to the face, reality hit: we are all pretty sick humans and even though some us look relatively healthy we are not, and the treatment out there is quite limited and not a cure all. I found this dose of reality when I started to lose friends to scleroderma. One after another after another, I would hear of beautiful people I knew losing their battle with this disease. Life as I knew it was turning around from pleasantly wonderful to utterly unfair and tragic.

When you lose a close friend or even a family member, it’s difficult and lonely, and very sad. I was finding that losing someone to the same exact disease I had myself was something totally different. It was numbing, consuming and scary, but also I was feeling horrified because I felt a smidgen of relief that I was still here. Then I felt a wave of guilt for still being here when they are not. How can you get past feeling guilty for being alive and feeling relief that you are still here? These were brand new emotions for me and I didn’t know where to put them at all. I still find it hard.

So when June rolls around each year and I am by some grace from above still on this earth, I feel grief for the loss of so many of my fellow fighters who aren’t here to see our community thrive and fight for awareness, promote education and fill the internet and social media with our stories, our triumphs and our struggles. I feel grief that we have come so far, but are still losing people to this disease and have no cure in our sights. I also feel honored to be able to share my story with the world in the month of June, and to speak about my friends who we have lost in remembrance of their struggles and ultimate sacrifice.

June is a moth of awareness for scleroderma, a month to celebrate living another year with a disease that for now is incurable. It is also a month to remember all of the amazing, beautiful people scleroderma has claimed, and to maybe not feel guilty to still be here. I am here to honor those who aren’t, and to tell my story to help others, spread awareness and educate people. Hopefully one day June will be not just an awareness month, but a month of finding a cure. 18 months of June and counting, I hope I get to see that day where a cure is found in my life time.

Follow this journey on Professional Patient in Makeup and Mittens.