Things I’m Thankful and Not Thankful for as a Person With Mitochondrial Disease

I often say what I’m thankful for, but with Thanksgiving coming up, I can’t help thinking about things I’m not thankful for. I think about how my life would be different if this illness weren’t in my life. I often say my experience of living with mitochondrial disease has made me a better person, but I’m pretty sure I would have been a good person either way.

I must admit that Thanksgiving brings up some not-so-great memories. Back in 2004, I was happy to have the long weekend break from work, but after waking up feeling like my healthy self on Thanksgiving morning, I suddenly got very dizzy and nauseous and thought I’d come down with the flu. I didn’t make it to my aunt and uncle’s house that year as I had done every year of my life previously (except for the one time I was abroad in England). I won’t go into much detail since the diagnosis part isn’t what I’m writing about here, but I will say the next two years were a nightmare. Then I was finally diagnosed with mitochondrial disease and haven’t felt healthy since.

There were so many people who were so supportive of me back then. My immediate family and many friends still are, but many others stopped being my friend when I needed them the most. Some co-workers stayed in touch for a while, but how long could I expect them to remember me after I had stopped coming into work. I suppose I’m thankful I know who I can trust and who will be there for me when I need them. As soon as I couldn’t do the same things I used to, some who I thought were good friends completely disappeared. I know if things were reversed, I wouldn’t have turned my back on them.

I don’t hate Thanksgiving. It’s a chance to get together and have a nice day with family, but being a vegetarian, I wasn’t in it for the food. In recent years, doctors had me on a gluten- and dairy-free diet after I was diagnosed with gastroparesis. I often feel sick after eating, so social holidays centered around food aren’t my favorite. Then again, we live in a culture where socially gatherings seem to be always centered around food.

The life I am living is not what I expected it to be. I’m 36 years old and living on my own, but I only moved out of my parent’s house a couple years ago. I have grown up a lot, but I would have grown and matured without this illness as well.

I probably never would have heard of mitochondrial disease, and I have done a lot of volunteer work to support this great cause. I had done plenty of volunteer work throughout my healthy years and am pretty sure I would have continued to do so. It could have been for a variety of causes instead of just for mitochondrial disease.

It’s true that my experience of living with an illness is different, but having an energy disorder keeps me from being able to do so much. I probably wouldn’t have been this passionate about a cause or maybe some life experience would have inspired me to be. I was almost done with grad school before my sudden life change that Thanksgiving Day. Years later, I did finally graduate with my masters in public administration, so yes, I always had an interest in nonprofits and doing good things.

My life now consists of a lot of downtime, watching TV and reading lots of books. Of course, medical appointments take up a big chunk of my time. I often go days without going outside, and I used to be someone who traveled a lot. Now my passport has expired, and I haven’t been on a plane in years. I’ve turned into an introvert and don’t recognize the social person I once was. I see friends occasionally, but nothing is as carefree as it once was. My favorite time is when I’m with my niece and nephew, but they can wear me out for days afterwards.

Who knows what my life would have been like? I live in the Boston area, but I stay here because of the great hospitals. I could have been married with the kids I always thought I would have if it weren’t for this genetic disease with so many debilitating symptoms. I feel torn between the person I used to be and who I am now. In my mind, sometimes I’m that confident and healthy person with nothing holding me back, but my body and many symptoms constantly remind me I am now disabled even if you can’t tell by looking at me.

I was always a hard worker. Being ill and unable to work with the financial implications that came with it was never in my realm of possibilities. I’m not thankful for my very limited income and how much of it goes to medically related stuff.

People tell me how strong I am because of all I have endured, but I was strong before this. I’m just trying to do my best with what life has given me, and I can’t help thinking what my life would have been like if I were healthy and never heard of this disease. I’m not thankful for all I have missed out on. I still can’t help imagining the what-ifs. I know I still contribute a lot in this life with mito, but what could I have accomplished if I didn’t have it?

As much as there is to complain about, I have so much to be thankful for. Through my volunteer work, I have raised money, helped out with events and shared my story. I know I have helped others because I remember how overwhelming it is to be a young adult and new to living with a chronic disease. I have met amazing people who I otherwise wouldn’t have crossed paths with.

I was so busy working and going to school when I was healthy that I had no time for myself. I’ve learned I love doing craft projects. My friends who work don’t have the time to crochet scarves or make jewelry like I’ve made for them. I also enjoy baking — something I never used to have time for. And I’m thankful television networks are so competitive that there’s a lot of quality TV!

Most of all, I’m thankful for my family who are always there when I need them. I’m especially thankful I am so close with my niece and nephew since I don’t have children of my own. As an aunt, you get to do fun stuff. Their parents are the ones who have to make sure their homework gets done.

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