The Life Motto (Almost) of a Person With an Unpredictable Rare Disease

I have heard that the only constant is change. In my experience with mitochondrial disease, that saying is almost a life motto. Some days I can walk two miles. Other days, my legs are so swollen I can’t move. At one doctor’s visit my lab work will look great, but then in just a few days, I’m malnourished or in lactic acidosis. With a disease as unpredictable as mitochondrial disease, the only thing I can do is get used to the fact that there is no normal.

I was diagnosed with mitochondrial disease about four years ago; however, I first got sick almost seven years ago. My symptoms came on almost overnight. One week I was a healthy, 22-year-old newlywed. The next week I was being hospitalized because I could not breathe and my whole body was swollen. It has been a complicated journey. I was even told at one point that I would not make it more than a few months. However, I’ve survived. I am currently 28 years old. I am still happily married. I not only am no longer bedridden, but I even have my own small business. This rare disease has handed me a lot of challenges, but it has also taught me several lessons.

Being diagnosed with an incurable, often fatal disease is difficult. It can strip you of your identity. It makes you reflect on your life in ways you never have before. At the start of my illness, I lost my ability to walk. People stared at me as I used my wheelchair, or on better days, my walker. I felt like I had no one that could truly understand me. Since they had no idea what was wrong with me, they tried a variety of treatments. The worse was Prednisone. To the doctor’s credit, I’m still on it and it works great, but it changed my body in ways I didn’t even know possible.

I would look in the mirror and not even recognize the person I saw. I have felt ugly. I wanted to hide. Before the medication, I had always been proud of my body. After about six months on it, I felt like a big blob. Over the years, I’ve learned to accept the changes to my body. I may not look as I did before I got sick, and my body may be covered in scars, but I’m still alive.

Having mitochondrial disease has helped me to realize your outward appearance isn’t everything. Before I got sick, I put a lot of effort into making sure my appearance was appealing to others. After being sick for years, I now know the only person I have to appeal to is myself.

Mitochondrial disease has also made me a more compassionate person. I literally have had to walk in dozens of different shoes with my assorted symptoms and conditions. Since my illness started, I have taken more time than ever before to volunteer. I have also reached out to others suffering from the disease. I do not want anyone else to feel as alone as I did when I first got sick.

I’ve learned to deal with the changes. I have learned that sometimes, all I can do is take a deep breath and fight through the day. I’ve become a stronger person.

Editor’s note: This post is based on personal experience and shouldn’t be taken as professional advice. Talk to your doctor before starting or stopping any medication.

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