What People With Mitochondrial Disease Want You to Know

Since September is Mitochondrial Disease Awareness Month, I thought this would be the perfect opportunity to share with you some of the thoughts and opinions of the mitochondrial disease community. To accurately represent the struggles and realities the mito community faces, I decided to ask members of the mitochondrial disease community to participate in a nine-question survey about their lives with mito. Here are some of the answers:

1. What is living with mitochondrial disease really like?

“It’s a full-time job. There isn’t a time of the day where I cannot be sick. You don’t ever get better, you just have different severity of symptoms depending on energy levels. It can be physically and mentally exhausting. It’s very isolating in the medical community because no one knows anything about it.” — Emilee C.

“Lots of unknowns.” — Alexis K.

“It sucks… OK, but really, it’s incredibly frustrating. I haven’t been able to walk, move, or even breathe on my own since I was 3. Not being able to move on my own has also weakened my bones and I’m always afraid of being injured or fractured (it’s happened quite a few times). Having to use a ventilator 24/7 has its challenges as well.” — Connie M.

“Tiring and complex.” — Emilie T.

“It’s not fun. I have a lot of insecurities about my body and struggles with self-confidence. I think that the hardest part of living with mito for me is that I feel like I never fit in anywhere. I’m a college senior and I look healthy but have to go to all these doctors’ appointments and I wear hearing aids and glasses. My sister passed away from lack of energy from mito five years ago. It’s just tough finding my place where people will accept me even though I don’t drink or party.” –Katherine C.

“Mito affects every single thing I do daily. Mito is exhausting mentally and physically. It is stressful always trying to get help. It is central lines, feeding tube formula, wheelchair.” –Kristina K.

2. Are you afraid that people will judge you because of your illness/disability?

“Yes, absolutely.” –Emily S.

“Hell no, they can kiss my a**.” –Nate W.

“Yes, I have already been judged multiple times because of it.” –Kailee P.

“Yes. I’m always afraid of pity and feeling like a burden. I hate having to ask for help but it’s my cross to bear.” –Emilee C.

“Yes, I run IV fluids daily and the looks I get from people are depressing.” –Kristina K.

3. What is something people often say/ask you about mitochondrial disease that you wish they wouldn’t?

“It could be worse.” –Alexis K.

“You’re exaggerating. You are a hypochondriac.” –Samantha P.

“Can she talk?” –Emilie T.

“Feel better” –Tayla R.

“Are you better yet?” “Are you still sick?” “I wish I had the problem of not wanting to eat.” –Emilee C.

“Everything is in your head and mito isn’t real.” –Kailee P.

4. What are some ways you feel limited by mitochondrial disease?

“I feel limited pretty much in every way physically. I feel limited socially as well, I think. A lot of people just see the disability and don’t really see the person behind that, so it’s just difficult at times to interact with others and make friends.” –Connie M.

“I feel limited by the fatigue, it’s exhausting. I also feel limited by my body and I hate having to be so careful so I don’t hurt the next day.” –Emily S.

“Not being as physically able to do things as others my age.” –Samantha P.

“It’s hard to travel alone with all the liquid and powder medicines I take. I hate that people think I’m a normal adult who can drink and go party. I feel like I’m limited by how much I can do in a day. It sounds cheesy and relatable to mito patients but I want to be like other college grads who get full-time jobs and date and get married. There are just some things I don’t think I have energy for, like my internship is already exhausting from home.” –Katherine C.

“Not being able to drive.” –Nate W.

“Limited quality of life, limited funds, energy, spoons.” –Tayla R.

“I feel limited in everything I do.” –Madison G.

5. What symptom of mitochondrial disease affects your life the most?

“GI or motility.” –Alexis K.

“High and low blood sugars from diabetes.” –Emilie T.

“Having seizures.” –Nate W.

“The fatigue, especially the brain fog. I naturally am a talk fast, think fast, walk fast, type of person — except some days I can’t even process what others are saying to me and I feel exhausted walking across a house.” –Devin S.

“I think it’s the muscle weakness.” –Kailee P.

“Migraines and ataxia.” –Madison G.

6. Are you comfortable openly talking about your illness/disability?

“Yes and no.” –Emily S.

“I am when people are open-minded.” –Kailee P.

“Yes, for the most part.” –Madison G.

“Yes, I am now, but I still get anxiety when I’m the center of attention about it.” –Emilee C.

“Yes, most of the time but it can depend on the person I’m talking about it to.” –Kristina K.

7. What is the hardest part about having mitochondrial disease?

“Feeling like I’ve been erased, like people don’t see me or who I am. Having to trust others with every aspect of my daily life, health, and overall life. Being abused by people who took advantage of that.” –Connie M.

“People don’t know what it is, and I have to explain it. Also, I don’t have a genetic diagnosis, just a clinical one, which makes it harder to know what treatment to use.” –Emilie T.

“Being isolated and having friends fall away.” –Samantha P.

“Accepting grief and coping with it.” –Katherine C.

“Not being able to live a normal life like everyone else.” –Nate W.

“Having no support outside of friends. No one seems to care or support us since it’s chronic.” –Tayla R.

“Watching those I love with it (sibling and friends) suffer with it. Knowing that we can’t predict our futures so at any point it could dramatically go downhill. But friends are also the best part of mito as well and I wouldn’t trade them for the world.” –Devin S.

8. What do people not know/get wrong about your illness/disability?

“How difficult pain can be some days.” –Alexis K.

“How much it affects my everyday life.” –Samantha P.

“That I can look good or seem OK and that means I’m not in pain or feeling pretty horrible. It’s easy to fake it some days and so many assume I’m less affected than I am.” –Devin S.

“Most people don’t know that everyone is different.” –Madison G.

“I work so hard just to do the bare minimum and it still doesn’t feel like enough.” –Emilee C.

“People don’t understand that my diseases fluctuate from one day to the next. Some days are good but others are bad. I can do something one day and the next day I can’t do it.” –Kristina K.

9. What is something you wish people knew about mitochondrial disease?

“It’s not a ‘one size fits all’ situation and having it doesn’t take away your right to live your life.” –Connie M.

“That just because you can’t see it, doesn’t mean it’s not real. Also realizing how much mito affects our lives.” –Emily S.

“I wish that people knew the different ranges of how badly it can affect a person. I hope that makes sense. My sister couldn’t walk or talk or eat, but I can do all of those things and I seem like a normal college kid. But no one knows that I’m struggling with my mito symptoms till I tell them.” –Katherine C.

“We can all look totally different and have different symptoms but can still be valid.” –Tayla R.

“That we’re not asking for pity, that we aren’t your inspiration, and that this is our norm so please don’t project your feelings/worries onto us.” –Devin S.