Three Things Mitochondrial Disease Taught Me

For the first 13 years of my life, I wondered if I really was a drama queen about pain or minor illnesses. I may be dramatic about somethings (just ask my husband), but this isn’t one of them. It was a huge relief just to know that there was indeed something happening in my body that was causing all of my issues. Finally, I was diagnosed with Mitochondrial Disease.

Through all of the days I was sick, when I missed sleepovers, exams, prom, and moved back home from college, I knew there was a purpose for it all. These are the three thing I learned from having Mitochondrial Disease.

What is Mitochondrial Disease?

Mitochondria are responsible for creating 90% of the energy needed to sustain life and support organ function. So, Mitochondrial disease (Mito) is the result of either inherited or spontaneous mutations in mtDNA or nDNA which lead to altered functions of the proteins or RNA molecules that normally reside in mitochondria.

Think about the mitochondria in cells as batteries. Each cell in our bodies is powered by its own battery. However, people with Mito have defective batteries. Our batteries can’t fully recharge themselves. You know when you’re iPhone warns you that the battery is at 20%? That is the level of Mito power some people live with daily. We have to go into “low power mode” and conserve what little energy is left.

It’s hard to say how many people are impacted by Mito, because many go their entire lives without a proper diagnosis. It is estimated that anywhere from 1 in 4,000 to 1 in 6,000 have a form of Mito.

Three Things Mito Taught Me

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1. I am Stronger Than I Ever Thought Possible…

First of all, strength is not a word most people associate with chronic illness. Say the words genetic disease to a “normal person” and watch them squirm with awkwardness. Their minds are filled with images of IVs, handicap stickers, and feeding tubes. However, it is true. With Mito, or any chronic illness, comes an entirely new level of strength. My brother, mother, and I all have Mito. It impacts us in unique ways and at different levels. I wrote about all of my challenges in this post last year.

So, back to strength. I had to endure countless hospital visits full of unpleasant tests (spinal taps aren’t fun y’all). I’ve had my blood drawn so many times that my veins started forming valves (bicuspid flap-like structures). During my junior year of high school, I had to leave all of my friends and my school of 16 years to be homeschooled due to illness. I had to learn how to be proactive with protecting my immune system and keeping cluster migraines in check. Many mornings I had to push through pain and fatigue to even take a shower.

More than physical strength, I also had to become mentally strong. It is so disheartening to be a child or teenager and not be able to join the “normal” things my peers did. Keeping the mentality that I have Mito to serve some greater purpose is a powerful way to live. Even in the most depressing situation, socially or physically, I kept that in mind. I truly believed it then, and I truly believe it now.

If you have Mito or are in a similar situation, you are strong. You are powerful. We fight for more on a daily basis than some people will fight in their entire lives. So what if I missed prom? Was I devastated at the time? Yes. Do I care now at the age of 24? Nope. In fact, I’m going to make a confession. I’m pretty glad I didn’t have to go through some of the temptations that most teenagers face and later regret. Be thankful for what you are missing. As weird as it sounds, you are better off because of it. We are totally unique people because of this. The world needs our special perspectives and experiences. Acknowledge the superhero strength we’ve been gifted.

2. I Know the Power of True friendships…

Isolation is a real thing. One of my mentors, someone who truly connected with me through the worst of my Mito, ministers to people who are ill. He said, a person undergoing many rounds of chemo asked him, “where are all of my people? Everyone left.” Thats a true statement. For people who are “normal,” this whole sick thing can be intimidating….Not everyone, but generally speaking. I can’t tell you the number of times in high school I thought about the phrase out of sight, out of mind. I was never at school. I couldn’t hang on the weekends. Forget about doing sports or extracurriculars. I was out of sight. Because of that, I left the minds of many people I thought of as friends. Sure, we texted every now and then. But, it just wasn’t the same.

However, instead of getting caught up in the loss of those “friendships,” I found comfort in my core group. I realized that I didn’t want those fake friendships. Why waste my time with people who didn’t care about things outside of their little bubble? I want true, deep, lasting, supportive friendships. The kind that lasts decades and crosses state lines. That’s exactly what I found. I discovered there are people whose hearts are unimaginably giving. My best friend, who was also my maid of honor in November, is one of those people, along with several other girls I have known since elementary and middle school. Three of them were my bridesmaids. It is so special to look at my wedding photos and think about how much they mean to me. They are patient. They understand that I can’t always go out, but that I still am here for them. They are always here for me. I wouldn’t trade my small group of true friends for a thousand phony friendships.

Find comfort in your people. There is real value in the statement quality over quantity. Don’t look on Instagram and compare yourself to people going out with a huge group every night. Instead, I choose to be thankful for the overwhelming love I have in my small tribe.

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3. I Can Still Impact and Inspire People…

There was a time I was living between my couch and my bed. The walk to the kitchen was even tiresome. How could I, the girl who is sick, possibly make a difference in the world? What is the purpose of these weird Mito symptoms? Surely it’s not just to make my daily life challenging. My family taught me from a young age that helping people is one of the most important things in life. It took some time and a lot of searching on my part, but I found small ways to make an impact.

First, I created an online jewelry business. When I made a sale, I included a handwritten note thanking and encouraging my customer. To my surprise, people left raving reviews about getting my tiny notes. I realized that making an impact doesn’t mean doing something huge. Even the tinniest gestures make people smile.

Next, I started sponsoring a child through Compassion International. Every other week, I would write a short letter with a coloring page or baseball card and pop it in the mail. I got so many replies from my sponsor child. Seeing his smiling face in photos with my letters made my weeks. I actually was able to see him through to his high school graduation. Something that is rare in his part of the world. Talk about feeling fulfilled. I’m pretty sure he brought ten times more happiness to me than I could ever give to him.

I also joined Facebook support groups of Mito. I posted and got support from people like me who understand the struggle. I made friends across the country. I lift them up in hard times and find ways to brighten their dark days.

All of this is to say, find a way to help someone. With so many apps and types of technology, it is super easy to find low commitment ways to communicate and support people. Find a passion and pursue it online. Make someone’s day brighter.

What About Today?

As I started using natural products, I started realizing my body was doing better. When I give it the things it needs for balance, I am able to do more things. Five years ago, I started to see the change. I slowly began a new healthier life. I work full time as a special education teacher. I found and married the love of my life. I’ve had six minor colds in five years. That’s it. Not hospital visits or long term illnesses. I’m training for a 5k. I walk half a mile every day with my blue tick hound puppy, Beau. These are things I never even imaged as possibilities.

Now, I see that those years of struggling have meaning. I still have days with Mito flares. However, I have more “normal” days. I use my past to reach out and help people who are in similar situations. I run a business where I focus on helping people with unique wellness challenges. I’m their friend, cheerleader, and confidant. More than that, I provide easy solutions for comfort and supporting the body. None of that would mean anything, if I didn’t personally have health struggles.

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The Bottom Line

There are blessings to be found in the struggles. None of these challenges are pointless. In fact, they are the most important lessons I’ve learned in my 24 years. I’m a better person today because of Mito. Yeah, I said it. So, go celebrate who you are. Find beauty in the pain. And, if you need a friend, I’m here! Nothing makes me happier than finding new friends. Let’s chat, laugh, cry, FaceTime with my puppy, and make the pain a little less severe. Even more of my crazy life is shared on Instagram and Facebook. Join up with my wellness family. Subscribe here, I’m sending out virtual hugs.

Loren Cooley 918200 Silver

Loren is a wellness advocate, a Special Education Teacher, a recent newlywed, and a hospice volunteer. Hiking, tea, visiting local breweries with her husband, photography, chocolate, and reading, are some of her favorites. 

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