On January 13th 2016, I received a letter from the Social Security Administration stating “Based on a review of your health problems, you do not qualify for payments on this claim. This is because you are not disabled or blind under our rules” I think it’s safe to say that I was astonished by the words I was reading on that piece of paper, due to the fact that I have a serious genetic mutation disorder called Ethers-Danlos Syndrome and the pain and Problems that I have experienced because of this disorder have been tremendous.
Ethers-Danlos Syndrome also known as EDS, is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body. Because of those facts stated above. I have torn muscles, in both of my hips, my shoulders and hips dislocate, I have developed the disorder known as POTS, and I also inherited IBS. Apart from EDS, I also have chronic ADHD (attention deficit/hyperactivity disorder). I have missed a total of 180 days out of the 4 years of my high school education because of the physical and mental agony these disorders have called me.
The Social Security Administration stated that “Specially trained staff, who had doctors available to discuss this case, looked at this case and made this decision” when I read those words my mind was distorted and I a whirlpool of thoughts ran through my head. I’m only 19 years old with medical records that reach the page numbers of 300 plus in just two years. I can’t stand for more than an hour, I can’t sit for more than an hour, I can only walk a certain distance because if I walk to long my hips dislocate. At the age of 19 I can no longer do the physical activities I once loved to do because of the physical agony that comes with it. I can’t eat without throwing my food back up, or feeling a whirlpool of nausea.
Last year I got down to 100 pounds because of the fact that I can’t hold my food down. A 5’6 18 year old weighing 100 pounds, unless you ever looked in the mirror and saw the face of death looking back at you, then you don’t know the feeling I felt every time I saw myself in the mirror. I suffered a lot, and every day that glass mirror got tougher to watch. I missed both of my high school proms because I was physically unable to go. When I read those words that what I go through on a daily basis was not considered a disability, my feelings were hurt, I felt like my intelligence was insulted, and I felt like my disorder was taken as a joke.