When Your Illness Can't Be Found in a Textbook

I have a very rare form of autonomic dysfunction that affects my HCN channels in my brain that makes my autonomic nervous system (ANS) prematurely age. My ANS is equivalent to a 60-year-old’s stuck in a 20-year-old’s body.

Never heard of this? Neither had I. I was always told I had autonomic dysfunction but they could never truly classify what kind it was. I was sent to a doctor at the University of Connecticut Health Center who specializes in the aging process because I was showing signs that suggested I was aging.

My doctor said to me,”Well, currently this is not discussed in any textbooks and many doctors for the longest time found this as a controversy, but you are prematurely aging. There is proof that this happens in a handful of people. How many people? I could not tell you.” As millions of questions raced through my heads as to what that meant, I sat there with a sense of relief, because I finally had an answer.

Having an illness that is only known by a few doctors in the United States is very difficult. This causes many challenges when I am not able to see my doctors at UCONN, but even harder to explain to an everyday person. Many people think I am making it up. Others can’t comprehend that I feel like I am an older person in a young person’s body and that I can’t perform to the capacity of a typical 20-something-year-old, especially since I look completely normal (with great concealer on). The stigma behind “non-textbook” illnesses is very real and needs to be addressed. New diseases and illnesses, sadly, seem to be becoming the norm.

Recently, my doctor received a huge amount of funding towards my illness and he said, “You may not be around for it, but someday, I promise, your illness will be in a textbook and accounted for.” That has given me the drive to push forward another day.

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