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When I Realized I Could Still Have 'Better Times' Despite My Progressive Disease

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Having a progressive disease such as mitochondrial disease means that the older I get, the sicker I will become. But does that mean all my “better times” are strictly in the past, or is there hope for a better future?

I’m the type of person who always looks for a silver lining, but when I was first diagnosed with mitochondrial disease, I felt truly hopeless, something I had never felt before. I had been sick for close to 10 years, but we were always looking for an underlying cause to my symptoms, one with at least a treatment, let alone a cure. Finding out I would not only never get better but would get worse over time was just about the biggest blow I could imagine at that point in my life. Holding onto hope that I would one day be healthy was what had kept me going the entirety of my journey with my mystery illness.

There were different stages to grieving the life I thought I would have. First I cried a lot. I cried thinking about what my life was at that moment in time. I cried watching any happy or sad TV show. I cried for no reason at all. I was crying 10 times a day every day. Then I stopped crying but was completely numb. I felt empty and just went through the motions of life but wasn’t really living. Then about six months later, I became connected with people who have the same disease as me. That’s when things started to change. All of a sudden I had things to look forward to. I felt understood. I felt hopeful.

I started re-imagining the life I wanted. I had different dreams — ones that were achievable. I met people twice my age living with mitochondrial disease. I learned it is possible to have “better times” with mito.

I will never be healthy, at least without huge advancements with mitochondrial disease research that don’t exist at the moment. But I’ve come to realize I don’t need a cure right now. All I need is a better treatment than there is at this point in time. And when that treatment comes one day, I’ll start praying for an even better one. Don’t get me wrong, I would love a cure. I would love to be less symptomatic and spend less time in the hospital. I am terrified of dying from this disease before I’m ready to go. But I’ve learned that my happiness doesn’t depend on a cure. I’ve learned to find joy in my life despite all the pain and limitations. I learned to find joy in the new future I imagine for myself.

My outlook on life has definitely changed a lot since I was diagnosed with Mito five years ago. I went from thinking my “better times” were a thing of the past to knowing that isn’t the case. My happiness doesn’t depend on my health, and there is nothing wrong with imagining a different future for yourself, one where you live with a disease.

This story originally appeared on Grace and Mito.

Originally published: December 25, 2019
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