The Mighty Logo

How I Learned to Embrace the Imperfections of My Chronic Illness

Maybe my life would have been different if…

This thought runs through my mind pretty frequently nowadays and as I ponder what exactly would be different. I sometimes wonder what if anything about myself would I want to remain the same. We as humans are always consumed with thoughts of what we would look like if we had a different body, were ten pounds thinner, had a new nose or walked with our back straighter. I think in today’s society it’s common to constantly want to be our “ best selves” but at the expense of what or whom?  Why can’t we as people (and especially as women) be content with what we were born with and how important of a role is society in this “imperfection correction obsession?”

For as long as I can remember, I was unhappy with the way I looked — more specifically, how much I weighed. As a child I was considered overweight; growing into my early teen years I was “chubby.” It wasn’t until my senior year of high school that I started to slim down and lose that “baby fat.” My weight was a constant source of bitterness for me because I was a pretty athletic child. I was a dancer (tap, jazz and ballet) and I was active. I swam, hiked, fished and rode my bike a ton. However, I was still considered overweight growing up, and I could never understand why, especially considering how active my lifestyle was.

It wasn’t until I became a teenager that I realized my weight might not be coming off because of my eating habits. So I changed how and what I ate and my body started to respond. I lost weight the summer going into my senior year of high school. I felt and was told I looked great! But the image I had of myself was poor, and I always thought I could look better or be thinner. The more weight I lost, the more unattractive I felt.

Two months after my 19th birthday, I was diagnosed with a rare chronic illness called systemic scleroderma. It is an autoimmune disease that affects the skin, blood vessels, muscles, joints and, in some cases, the internal organs like the heart, lungs, esophagus and kidneys. Scleroderma causes hardening and thickening of these body parts and can be terminal. There is no known cause and no cure.

After my diagnosis, I started to wonder if I lost the weight from my hard work and diets or because I now had a chronic illness that was eating away at my skin, joints and muscles. Did all of my hard work even matter? And why? Was it so important for me to look a certain way to feel beautiful; where did that issue stem from?

As my illness progressed, my body started to change drastically to the point where friends I hadn’t seen in a year or so wouldn’t even recognize me. My face was becoming tight and my features were more defined. My lips were thin little lines and my teeth appeared larger when I smiled. My skin looked darker and shinier because it was tight and thicker from my disease. My hair started to thin, and in some spots fall out.  I also started to develop red blotches all over my face, neck, arms, chest, back and upper thighs — this was a common side effect of scleroderma and the blotches were permanent.

The sicker I started to get, the more my appearance shifted. I was devastated. I thought very strongly that your identity is everything and it defines who you are as a person, and without it you were no one. Who was I if I couldn’t even be recognized as my true self by my friends?

It took me a long time to accept the things in my life that I cannot change. I cannot change having systemic scleroderma and I cannot change what this disease has done to my appearance, but I can change the way I feel about myself and the way I present myself to others. I am now 37 years old and have been living with scleroderma for more than 17 years. Not only have I learned to accept my life as a chronically ill person, but I have also learned to love the human that I am inside and out!  Living in a body that really has a mind of its own can be frustrating and confusing, but as long as I know my limits and am able to lean on the support of my family and close friends, I find it’s not so bad.

I had spent so much time trying to change who I was, that I didn’t really embrace the beauty of just being me. Now I travel all over advocating for other individuals living with scleroderma. I tell my story so that other people do not feel like I did: alone and afraid. I share my struggles to help others to learn that even though your life is difficult and you might feel less, life is full of amazing, exciting, adventures just waiting for you to find and that yes, your body may be failing, but you can still push through and feel beautiful, loved and happy, and live your best life in whatever vision it looks like for you.

No matter what society perceives as trendy or pretty or unique, being 100 percent authentically you is what is truly beautiful. Having a story to tell and overcoming adversities along the way is honorable, and not being afraid to say you are flawed is perfect in my eyes. To me, embracing your weakness and being vulnerable shows you are someone who is truly living — that is definitely what our time on this earth is for!

Follow this journey on Professional Patient in Makeup and Mittens.

Getty image via bruniewska.

Conversations 1