Sisterhood: Supporting Other Young Adults with Similar Conditions

by Michaela Shelley

“Many places I have been, many sorrows I have seen. But I don’t regret, nor will I forget all who took the road with me.” – Billy Boyd

When I was eleven my brother was diagnosed with Mitochondrial Disease. A degenerative, genetic condition that has no treatment. When I was fourteen I was diagnosed with a disease that affects less than 45,000 people worldwide. When I was fifteen I was diagnosed with the same disease that is claiming my younger brother’s life.

Originally, I was lost and scared, but I found my sisterhood among a group of mostly girls connected through social media. We all have different diagnoses, different stages of treatment (if there are any for our specific diagnosis), and different locations across the world, but the one thing we share is the sense of mutual understanding. There is nothing more special than being present with someone who knows what’s wrong before you open your mouth. Even though I have never met many of these girls in person, I have shared more of my fears and worries with them than I have shared with my own parents. They are more than my online friends—they are my family.

I still remember the nights following my return from traveling to the number one specialist for my disease. After two surgeries and several procedures, the doctor walked into my hospital room and told my parents he was sorry but there’s not much of anything they can do. He told my parents I would be lucky if I ever got better. In fact, I would probably only get worse. My parents didn’t cry and I didn’t cry. We were all numb and exhausted.

I didn’t say a word on the eight-hour drive home, but once we got home I called my best friend, Christine, from our close-knit group and cried to her until we both fell asleep on the phone together. I was devastated and angry, but not for myself. I was devastated for my parents who now had to worry about not just one of their children loosing this uphill battle, but two of them.

Christine and all of the other girls have helped me through my darkest moments and cheered me through my greatest accomplishments. I believe that’s the most important part of being in a sisterhood. Not only being there when life couldn’t be any better but also being there in the darkest of times.

Together we cry, we laugh, we pray, we celebrate, we hope, and we dream. We are all deep in the trenches fighting to stay alive, we are scared and suffering, yet we still make time to lift each other up. We celebrate the success of the girl whose cancer went into remission while we pray for a miracle of our own. It’s about being humble and not making everything about yourself.

So many girls have come and gone since I joined this “sisterhood” and I am privileged to be one of the originals still breathing, still living, and still fighting. Our lives have been anything but perfect, but we have made something beautiful out of the imperfections.

Author: Michaela Shelley • Date: 2/20/2018

About the Author

Michaela is a 19-year old college student with mitochondrial disease and several other diagnoses. She advocates and raises awareness for teenagers and young adults struggling with chronic illnesses. She writes about her experiences via her blog:

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