A Peek Into My Life With Mitochondrial Disease

Over the past seven years, I have suffered from a variety of medical issues. Some I talk about and some only those close to me know about, but they are all related to a disease that has no cure and very few treatments. I may appear fairly “normal,” but on any given day I am dealing with pain, muscle weakness, stomach problems and whatever else my body decides to throw at me for the day.

I’ve realized that I’ve changed since getting sick. I am sometimes less dependable, I don’t go out as often and I am not always happy. However, I am also stronger and more confident in myself then I was before. I do not want anyone to feel sorry for me. I also do not want anyone to think I am less capable of working, raising a family (in the future) or living a happy life than someone without a chronic condition. I want to give you a look into my life with mitochondrial disease.

My life is now all about balance. I can work, get daily tasks accomplished and spend time with loved ones, but sometimes I can’t do it all on the same day. I want my life to be about more than just my physical limitations. To accomplish that, I work hard to keep my disease hidden and to keep up with everyone else, but sometimes I just need some relaxation time. My cells function differently than most other people’s, so to be honest, life in general makes me tired.

I can’t always work all week, then also run around on the weekends. I don’t always make it to church or an activity I’ve been planning with my friends or family for weeks. My energy can be very limited. In order to live the productive life I strive for, I have to make sacrifices. Sadly, those sacrifices usually come from my social life.

Having mitochondrial disease can be lonely. I need to rest more than others. This sometimes makes people assume I don’t care about a commitment I made. This could not be further from the truth. However, I also care about my own health. Sometimes I have weeks where my energy levels are good, and sometimes I have weeks where they are not so good. Life has to go on regardless.

Accepting that I have a lifelong chronic disease was hard, but I’ve done it. If you are holding onto any grief or negative emotional feelings toward my illness please just let it go, as I have. Even though there is no cure for my disease, I hold onto hope that because of research done today, children and adults diagnosed in 10 or 15 years will have a much better life.

Please know I’m trying. I am trying to balance work, time with family, my social life and my spiritual life. Sometimes I succeed and sometimes I fail. I can say I live every day to the fullest extent that I can.

Thank you for your understanding.

woman and man sitting on couch with dog
Patricia, a friend and her dog

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