Summer: Wearing Illness Proudly
Hey, All! I’m Summer, and I blog over at <http://sedentarysuperwoman.com/>. I’m a devoted dog mom, literature enthusiast, frequent flier at the hospital, and advocate for rare-disease care and awareness.
Eight years ago, I began having severe fatigue, pain, and limited mobility that interfered with my extremely active life as a college honors student. I saw doctor after doctor, and they brushed me off with laughable advice: I was too stressed, or I should try food eliminations like lactose and wheat. Meanwhile, I was fainting in my dorm room and spending nights in bed with severe full-body pain, while my friends went to parties. At age 22, four years after the beginning of my severe symptoms, I quickly dropped twenty pounds, and ended up on a feeding tube. It was then that doctors finally seemed to grasp the seriousness of my illness and dig deeper for answers. It wasn’t until last year that I was finally diagnosed with Ehlers-Danlos Syndrome, Mast Cell Activation Disorder, and Dysautonomia, along with two previous diagnoses, severe digestive distress and Fibromyalgia.
It took eight years of spending my days at the hospital, losing friends and loved ones, and slowly losing control of my once-strong body, to teach me that I could live a fulfilling life with my chronic illness– that I didn’t have to wait for my sickness to go away for my life to move on. During those same eight years, I battled resistance from doctors who told me repeatedly that my illness was psychosomatic, our abled culture which reinforces that my worth could come only from my achievements, and “friends” who told me that I could be cured from my genetic disorder if I only did more yoga or ate more kale.
This is the problem with living in modern society with chronic illness — we are told repeatedly that we are less valuable, less accepted, and we have less to offer the world because we are sick. My goal is to combat these lies and to advocate for marginalized chronic sufferers who are more than adequate. It should be widely understood that even in illness, we are aware, talented, and intelligent. We are much more than our suffering, and we have much more to offer than the misguided abled world expects of us.
IVYE is a company that shares my passion of spreading awareness and creating a more welcoming environment for chronic fighters at any stage of diagnosis or disability. Clothing created specifically for chronically ill clients means less discomfort in therapy, or hospital procedures, and more confidence in our social surroundings. We can be physically limited, and live actively and comfortably at the same time. My illness is some of my experiences, but it is not the sum of my experiences, and I intend to wear that message proudly.