Looking Back on My Years With Scleroderma


This year I turned 35 years old! I cannot believe how the time has gone by. In the blink of an eye I’m now almost middle-aged. I am discovering gray hairs and my body doesn’t seem to want to work properly.

To be honest, my body has never really been a model of health. When I was 19 years old, just graduated from high school, I was diagnosed with a rare, chronic, terminal disease called systemic scleroderma. Scleroderma is an autoimmune disease that affects the major organs in the body (heart, lungs, kidneys, liver) by hardening and scarring the organs. It also causes the skin to harden and that can cause issues with flexibility and mobility.

Having been diagnosed so young with such a life-changing disease, I quickly learned that the person I was before scleroderma was clearly not going to be the same person I needed to be living with scleroderma. There were so many things I just couldn’t do anymore. I could not play sports, I could barely run or even hold a baseball. I had extreme fatigue, so most days I was exhausted. School and work back-to-back was something I was definitely struggling with. Eventually I just couldn’t physically push my body any further. I had to quit college.

To me this was the most devastating decision I had to make in my life. I had worked so hard to get into the nursing program and now I was going to quit the one thing I had never done in my life prior to this. My dad had always told me, “You can hate something, and be miserable while doing it, but you do not quit! It’s important to always finish what you start no matter how awful it is.” And there I was quitting college. What would people think of me? What would my parents think of me? Especially my dad – will he be disappointed?

In the end my dad was so supportive and understanding; both of my parents have always been so supportive from day one. To this day, having to leave the nursing program without my degree is a big regret for me. It’s probably my only regret in life.

 

Over the past 16 years of living with scleroderma I have had so many disappointments and setbacks. I had to give up my job and go on total disability. I had to get rid of my car because I couldn’t really afford to pay for the upkeep. I am still living at home with my parents and have never moved out on my own. My relationships with people have become very hard to keep because people just don’t seem to understand, even after I explain, that I cannot do a lot of things. I can’t ice skate or bowl. I can’t go hiking or scuba diving. I can’t afford to go on girls trips or lavish vacations. In the winter I hardly leave my house because scleroderma and cold weather do not mix!

I realize that is a lot for someone to handle and many times people think that because you don’t look ill, there’s nothing wrong with you. I also know that in dating, people often speak about marriage and building a family. Which is lovely – not something I’ve dreamed of, but definitely something I have thought about a time or two. Unfortunately, because of all of the medicine and treatments I have endured, I cannot have children. Which is a big deal-breaker for people and I totally get that.  My concern with getting into a relationship – be it friendship or romantically – is that the reality is I am quite a sick person!

That in itself is a huge burden for another human being to take on, not just physically but emotionally as well. I really need help doing things on a daily basis and that can make a person turn from a lover or a close friend into a caregiver. I can’t imagine that position to be easy for anyone to be placed in. Resentment can start to arise, and to be honest, I know my life is going to be cut short. I’m am almost 100 percent positive I am not going to get that “lifetime of love and happiness.”

I will not promise to love someone forever when I know I cannot give that person even half  that amount of time. You can say I’ve become cynical in my older age, but that is my true feeling. Make no mistake: I will fight this disease until my very last breath and I will have as much of a full life as I can force out of my failing body.

I’ve come to the conclusion over the years that although my life is and has not been what I had envisioned for myself for a long time, it is still pretty incredible. I have gotten to go and share my story with others and that has been very rewarding for me. It is so important to me to be able to help my fellow scleroderma brothers and sisters so they can have an easier go of it than I had. I have a wonderful family and close-knit group of friends that are amazing and I do not know where I’d be without their love and unconditional support. For the most part I have been pretty lucky to be able to go to several of my “bucket list” places and see amazing things.

Overall my life is so full of love, acceptance and support I could not ever ask for anything more. Scleroderma indeed has been an uphill battle, which I am still continuing to fight more than 16 years later. However, I can honestly say I am happy and I would not change a thing!

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