The story of Jill
Today is Rare Disease Day 2017, a day intended to raise awareness for rare diseases and the need for policymakers and the public to support researching them. I have multiple rare medical conditions, some that have just been diagnosed recently and likely some that we haven’t figured out yet. It took me almost 30 years to start finding answers. 30 years of being called a hypochondriac, a faker, a whiner, dramatic, mentally ill, lazy, weak, immature. Now we know all that unexplained pain were literally my joints pulling apart and dislocating, and my muscles tightening to try and hold them together, and my brain and lungs being deprived of blood and oxygen as my heart races to almost 200 beats a minute trying to compensate. All my life I have known that my body couldn’t do what everybody else’s could, and the only explanations I was offered were flaws in my character. And I internalized that. I believed I was all those negative things. I grew up thinking that way about myself and my personality and my perspective on life has been colored by the idea that I am sick because I am lazy. This is what most people in my situation live with, guilt and self-loathing wondering why we can’t just buck up and be better, constantly trying to force our bodies to do what we want, and being met with continual pain, failure, and blame. 30 years is too long to wait for answers.