To the Family Members on a Quest to 'Cure' My Chronic Illnesses
When you tell me to try a new supplement, doctor, self-care routine, exercise, psychologist, test, etc., I know it’s because you love me. You want me to have an amazing life filled with love, peace and joy. I am fortunate to have a family that wants only the best for me. You spend countless hours reading medical articles, helping me at home, making me laugh at doctors’ offices, and giving me space to cry. Your support is the reason I have made it through days with excruciating pain and tears of fear, and for that I am immensely grateful.
But I also want you to know that your quest for a magical cure hurts me tremendously. Based on current medical knowledge, my conditions cannot be cured. Your persistence that I need to be “fixed” is a rejection of not only my disability, but me. My disability is an identity, a community and a collection of knowledge. I need you to accept me in my entirety, including my disability.
When I was diagnosed with a rare form of mitochondrial disease and postural orthostatic tachycardia syndrome, you comforted us all by promising that I would “get better.” You suggested I only needed to find the magical antidote to the poison of my DNA hidden amongst the forest of health care. After consulting with nearly a dozen types of specialists, taking countless medications, trying alternative medicine and spending years in physical therapy in search of the antidote, I finally accepted that my conditions will likely affect me for the rest of my life. I became exhausted from fighting against my body and an undeniable reality. I decided to shift my energy from trying to change my life to loving it. And it was one of the best decisions I have ever made.
It was also one of the most painful decisions, because it meant I would no longer have the type of support I needed from you. Your instance on discovering a cure reminds me that you believe I can’t possibly live a fulfilled life with a disability.
I want you to know I do have a wonderful life, just the way that I am. I have a loving, supportive family and incredible friends who many only dream of having. I get make a difference in the lives of others every day when I go to work. I live in a community with caring neighbors and endless opportunities. And I hope I’m leaving a positive mark on the world for the next generations.
In fact, my disability is part of the reason that my life is so wonderful. Navigating the unknown of my disease and changing abilities has brought us all closer. The days my body fails me teach me how much these muscles and organs allows me to do and enjoy. Facing challenges that many people my age cannot even envision has helped me become a mature, strong young woman. Most of all, I truly know how precious each and every day is.
When you tell me that I need to search the ends of the earth for a miracle cure, I hear you say that I cannot live a happy life in a disabled body. But I am living a happy life because of, not in spite of, my atypical body. My body is the reason I get to be with you, and I love it for that. If you want to support me in the quest for a wonderful life, please support me in embracing my disability.
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