Yesterday, I lost a friend to the disease I live with, a disease that continuously takes with no regard for anything or anyone in its path. It wasn’t the first time I lost someone to Mitochondrial Disease, and I’m sure it won’t be the last, but nonetheless, it still hurts like hell.
I wish I could say that it somehow gets easier the longer you live with this disease, that you somehow manage to get used to the pain, but that isn’t the case. Although grief changes, it never gets easier to lose a friend, especially when they pass from something that affects you so personally.
When you have a disease that is incurable and progressive, death is a reality for you in ways that most people cannot understand. It is a given that you will eventually die from your disease and that you will lose people along the way. I’m aware that death is a reality for everyone, but it is drastically different when you are sick with such a life altering disease. You watch your friends die before they are ready to go, all while knowing that may be your reality as well.
Being diagnosed with a disease so rare and serious changes you deep inside in ways I cannot even put into words. When you are first diagnosed, your life comes to a sudden halt. Everything begins to crumble all around you and you feel scared, lost, and alone. It is not easy to hear your diagnosis the first time (or even the first 100 times), and 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 news like that, and the only way to keep going is by creating a support system filled with people who understand your struggles, know your pain, and share your biggest fears. They are the only people who truly know what you are going through and the only people who can somehow make you feel like you are not alone in this messy, disease-filled world. You create these strong bonds that you will never have with anyone outside of your illness community, so when someone in your support system dies, the pain hits in a very different way. Even when you think that you are okay, that you are somehow numb from all the loss, grief will always manage to break through. You can never escape it because it’s such a huge part of your life, but in order to get the support that you need, you have to endure a lot of heartbreak along the way. But somehow, the amount of love that these people bring into your life is so much greater than the pain, making all the heartache worthwhile.
When you lose someone to the disease that 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 if they will die before you or if you will outlive them. And do you really even want to outlive them? How can you go on and live life without the only people who know what you’re going through? How can you possibly survive that pain?
When you lose someone to the disease you live with, you are angry. It is not fair that they died so young and that they had to endure so much suffering during their life. How is it that someone can fight to overcome so much but still doesn’t get the time in this world that they deserve?
When you lose someone to the disease you live with, you think about their family and the heartbreak they are experiencing. You think about how their parents will never feel whole again and about how the world will always be a little dimmer without them. While you grieve for the friend you lost 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 ready to say goodbye. That is the part of this disease that kills me the most.