Published: 25/11/2022

We do exist and we need you to see us

I was diagnosed with Ehlers-Danlos syndrome at the age of 28. If it wasn’t for my medical background, but more importantly my persistence that something was wrong with my body, I wouldn’t have this diagnosis. I’m a long-covid patient and this virus has made my underlying condition more debilitating. My health journey has made me a better doctor because it opened my eyes to a different realm of chronic illness that is not taught in medical school or residency.

Growing up I always felt “different.” I was known as being flexible, a good dancer, excelled at swimming, had unbearable growing pains, constantly popped my knuckles, subluxed my knees/hips/shoulders, held my pencil differently because of pain, horrendous gastrointestinal (GI) issues since I was a baby, poor spatial awareness/clumsy (I have run into walls, dropped items, fallen up/down stairs, etc), weak immune system (had shingles at the age of 20 with permanent nerve damage), autoimmune corneal neovascularization when I was 18 (caused temporary blindness for 6 months in one eye), ankle sprains year-round, poor endurance, incorrect posture with intrarotation of the shoulder/head tilt, and easy bruising.

After I hit puberty, my EDS symptoms worsened. At the time I didn’t know it was EDS and neither did the doctors I was seeing. My EDS symptoms hit my GI system the hardest. For as long as I can remember, I’ve been bullied and mocked for being thin. Outsiders and even relatives in my own family made comments like, “Giraffe, stick person, skeleton, you should be a model because you are tall and skinny, eat something, anorexic, flat chest.” What people didn’t realize was that I’m a skinny woman not by choice but because of my underlying health condition. Because of my connective tissue disorder, I’m forced to eat small meals because if I don’t, I’ll be in excruciating pain. I have slow gut motility, IBS, and other gastrointestinal problems. My advice to people and doctors is to get to know the individual before you judge and make assumptions.

I still remember my professors in medical school telling us this proverbial phrase “when you hear hoofbeats look for horses, not zebras.” Well, I’m here to tell you that zebras and medical unicorns still exist. There is this view that patients with “rare” diseases matter less because there is no “cure” for our illness. We deserve an exceptional quality of life and just because we don’t have a cure or a go-to treatment plan, doesn’t mean we should not get a diagnosis.

I advocated for myself when I got long-covid in 2020 because I just couldn’t stand to suffer at this level anymore. I wanted to go after the root cause and was done with symptom management. I share my journey because I want to raise awareness. I have had medical physicians undermine and belittle my symptoms. Some have given me incorrect diagnoses and have psychologized my chronic pain. This damage of ignorance and egoism could harm patients for years down the road. As a chronically ill patient for decades, I speak on behalf of my other zebra and unicorn brothers and sisters to let you know that we are exhausted from being ignored, dismissed, and medically gaslit. We are not hypochondriacs, anxious, have “mind games”, or are attention seekers. Why would we want to be sick? Why wouldn’t we want to be healthy? It’s easy to judge but it’s harder to take a step back and examine the whole view. So please, from one human being to another, don’t forget our zebras and unicorns. Keep us on your differential. We come in all forms and vary in our strips and colors; however, we do exist and need you to see us.

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