Guest post: What It’s like Living with Mitochondrial Disease by Kelcie Miller-Anderson
My name is Kelcie Miller-Anderson, a twenty-something social entrepreneur and scientist from Canada. I also have several rare diseases. 3 to be exact, but the one that is most significant and impacts my life daily is called Mitochondrial Disease.
What Is Mitochondrial Disease?
Think back to the science classes you had in school. You might remember that the mitochondria are the “powerhouse of the cell”. This basically means that all of the energy your organs and body needs to function is created in the mitochondria. In my body, the mitochondria don’t work properly and fail to produce energy properly.
Mitochondrial Disease is genetic and I was born with it, but it wasn’t until I was around 20 when I started showing symptoms. 4 years later, just days after my 24th birthday, I was officially diagnosed with Mitochondrial Disease. It was both a blessing and a curse.
Although I was thrilled to have an explanation as to what was happening with my once lively body, I also had to learn to live with the fact that Mitochondrial Disease is a progressive illness with no current cures or even effective treatments. Treatments are palliative in that they treat symptoms and don’t affect disease progression.
What Is It like Living with Mitochondrial Disease?
My illness shapes every aspect of my life. It’s like I am constantly trying to function without a charge. Most days I spend on average about 18 hours in my bed. To most people that probably sounds insane but for me it has become my normal. The energy deficiency does more than just make me tired, though. Several of my organs don’t have the energy to work properly. This leads to even more problems and symptoms, like liver damage, hypothyroidism and malnourishment. Even something as simple as eating is quite difficult for me, as my body doesn’t have the energy to digest the food, meaning it sits in my stomach and digestive tract for a very long time, making me feel full very quickly and generally quite nauseous and sick.
The most life-changing impact of my illness might be the impact it has had on my mobility. I used to be a competitive dancer and gymnast and was constantly on the go. Now, even though I can walk occasionally, it’s not for very long. So I rely on tools like crutches or a wheelchair to help me move around.
When I was 18 I moved out and to another city a few hours away to go to university and pursue a degree in Environmental Science. I was sick, but not yet quite chronically ill. And I am lucky that I got to experience two fairly “normal” years of university before my health took a steep decline.
As my health declined, I realised I would never be able to work a typical 9-5 job, my body just wouldn’t allow it. So I stepped out of University and started my first company from my bed at 21. To the world, things looked great. I was running a start-up, moved into my own laboratory and was being recognised for my scientific research, being invited to speak around the world. But what nobody knew was that my health was still steadily declining.
I had to move back home at 22 so that my mom could help look after me. At first, being at home and having help allowed me to continue to work on my startup and live the illusion of a healthy young entrepreneur to the world around me. That was until I was diagnosed with mitochondrial disease at 24.
After getting the diagnosis, it seemed like the best option to put everything on hold. A month after my diagnosis, I gave up my lab and my life and became even more focused on my health. Doctors appointments and new medications. And most importantly, focusing on giving my body what it needed – rest.
Friends, Relationships and Mitochondrial Disease
One of the things that has helped me get through the life-altering reality of chronic illness is a group of really good friends. They’ve been with me through everything. Whether it’s coming over for tea and a chat when I am awake, or still inviting me out even when I constantly have to cancel because of my health. They’ve never made me feel bad or guilty for my illness or made me feel any different. Even though my life is worlds different from when they all met me, they treat me just the same.
My friends are even so amazing that they have helped me make my dream of travelling the world come true. Carrying my bags across countries and pushing me in a wheelchair through airports. Even though I still spend a great deal of time in bed and constantly need to rest, they do everything they can to make sure I can see the world. Chronic illness is the hardest thing I have ever faced, but having the love and support of my friends with me every step of the way is something I am beyond grateful for.
Having an illness that so severely limits the time I have not only each day, but without a cure perhaps in my life, has made me prioritise the important things. For me, that means the currently I just don’t have time for things like dating. When you only feel well enough to socialise once every week or two it makes you value your time so much more. If I have a few good hours I always choose to spend them with my friends or working on projects that are meaningful to me.
Since my diagnosis nearly a year ago, I gave into my illness. I started letting it control my life. To dictate the course of my life and take away my ambitions. It was soul-crushing to wake up everyday without purpose. To live with a body who fights me every step of the way. To feel like I was letting it win. And so I have decided no more.
Goals and Dreams for the Future
This month I made a list of the goals and dreams that I want to accomplish before I get too sick. I started a blog to record my story. I’m launching my first non-profit this fall and travelling to Brazil to launch my second business later this year. I want to share my story and inspire others. I want to travel the world. Most importantly, I just want to live a life that is meaningful to me while I still have the chance.
Where to Find Kelcie Online