I Lost A Friend To The Same Disease I Have And One Thought Hasn’t Left Me Since
triloks | CanvaMitochondrial Disease is a genetic disease that causes the mitochondria to malfunction, eventually leading to cell death and organ failure.
Yesterday, I lost a friend to the disease I live with. A disease that research has shown continuously takes hold with no regard for anyone or anything. It wasn’t the first time I have lost someone to Mitochondrial Disease, and it won’t be the last, but it still hurts.
I wish I could say it gets easier the longer you live with this disease, that you somehow get used to the pain, but that isn’t the case. Although grief changes, losing a friend never gets easier, especially when they pass away from something that affects you so personally.
I lost a friend to the same disease I have — and one thought hasn’t left me since: When you have an incurable disease, death is a reality in ways most people cannot understand.
Dragana Gordic via Shutterstock
It is a given that you will eventually die from your disease and that you will lose friends along the way. I’m aware that death is a reality for everyone, but it is drastically different when you are sick with a life-altering disease.
You watch your friends die before they are ready to go, all while knowing that could be your future. One study explored how being diagnosed with a disease so rare and serious changes you deep inside. I cannot explain or put it into words.
When you are first diagnosed, your life comes to a halt.
It feels as if everything begins to crumble all around you. You feel scared, lost, and alone. It’s not easy to hear your diagnosis the first time. If I’m being completely honest, it never really becomes easy. It just becomes part of your new normal. Life is never the same after receiving news like this.
Sometimes, the only way to keep going is by creating a support system filled with people who share and understand your pain, struggles, and biggest fears. These are the people who truly know what you are going through, who make you feel like you are not alone in this messy, disease-filled world.
You create strong bonds that you won’t find elsewhere, so when someone in your support system dies, the pain hits in a very different way. Even when you think that you are numb from all the loss, grief will break through.
You can’t escape it, because it’s such a huge part of your life. To get the support you need, you have to endure a lot of heartbreak along the way.
"Letting go of a person we loved is painful," suggested life coach Roland Legge. "Avoiding the pain will only put it off into the future. The more you repress the pain, the more excruciating it will be in the future."
Somehow, the amount of love people bring is much greater than the pain, making all the heartache worthwhile.
When you lose someone to the disease you live with, you think about how they died and wonder if that will be you. You wonder if you will die the same age as they did. Will you die at age 27, 33, or 39, or will you somehow live to be older? Will you die peacefully in your sleep, or will it be drawn out and painful?
You think about all your friends with this disease and wonder who will outlive whom. When you lose someone to the disease you live with, you become angry. It’s not fair that they died so young and had to endure so much suffering during their life.
Family therapist Tracey Cleantis explained, "In the face of grief, people feel angry, sad, enraged, guilty, shameful, fearful, relieved, numb, and even nothing. There is no normal. Normal is a setting on the dryer. What's more of a problem is when we get so stuck in one of these feelings that we aren't able to move on and access other emotions. Feel what you feel, but if you feel stuck, it's time to seek help."
When you lose someone to the disease you live with, you think about their family and the heartbreak they are experiencing.
How is it that someone can fight to overcome so much, but still doesn’t get the time in this world they deserve? You think about how their parents will never feel whole again. Also, about how the world will always be a little dimmer without them. All while you grieve for your friend and the family they left behind, you think about how that will someday be your family grieving you.
For me, this is the most heartbreaking part of this disease: Knowing that I might one day leave this world not only before I am ready, but before my family is. That is the part of this disease that kills me the most.
Grace Robinson is a writer who focuses on health and wellness, relationships, and friendship.
