No Zebra looks the same.
No stripe is the same.
Every body, experience, and combination of symptoms for those with Ehlers-Danlos syndrome (EDS) is different.
Part of what makes EDS so challenging to diagnose and treat is the fact that we have an infinite number of experiences and combinations of symptoms. EDS is a disease of which no race, gender, age, nor size is absolved of but is a disease that how we are perceived affects the care we receive.
Being plus size and LGBT gave me the physical barrier and judgment that prevented me from getting treatment and accurate diagnosis for so long. I am a stripe that once was invisible, withering away to nothing, who now, after years of fighting, is a stripe bolder and brighter than ever.
One of the biggest problems and barriers on social media as well as in the medical industry is the lack of representation and diversity of those with chronic illnesses. We don’t see people of color represented. We don’t see plus-size people represented. We don’t see invisible illnesses represented. We don’t see young people represented.
This not only affects society’s perception of who is affected by disability, in this case specifically EDS but also causes doctors to have a false and dangerous pre-made mold of who they believe are the only people affected by it.
My experience as a plus-size person fighting for answers and treatment led me to years of medical neglect, trauma, and years of untreated health issues leading to damage that could have been prevented. My diagnosis journey was years of doctors judging a book by a cover unwilling to read the pages. Instead of wondering why I am dizzy, in pain, unable to hold food down, doctors blamed my weight as the cause. Instead of seeing past my size to look for a root cause of my poor health, doctors made assumptions that denied me autonomy, respect, or treatment I should’ve had from the beginning.
It started with fibromyalgia, Myalgic Encephalomyelitis, and irritable bowel syndrome on my chart. It stayed like that for seven more years, and while they are still very real for me, it wasn’t enough or completely accurate. Despite having serious and life-altering symptoms still unexplained, doctors chose to treat me under the assumption that my poor health was an immoral decision I made myself.
Despite continuing to decline, doctors chose to believe that all my issues were psychosomatic or not important enough to look deeper for a better, more accurate answer. I started to believe them. I started to give up. I’d go online for support only to see chronically ill people who did not look like me. I’d continue living with identical symptoms to those who look different than me, but still unable to see people represented like me struggling the same.
When we are given only a small window to see people living with EDS, we do not see all the others affected beyond that. Without breaking the wall that hides all shapes, sizes, and demographics, we will never truly know how many people are affected by chronic illness. With EDS, in particular, any doctor I’d bring it up with would automatically shut me down because of my body type, the number on the scale, and my mental illnesses on my chart. Never was I asked to show them my hypermobility. Never was I asked for my own history and family history. Never was I given any lab orders beyond basic blood panels. Never was it even possible to consider that I could be sick and malnourished in a larger body.
It took me finding other plus-size people with EDS for me to realize we do exist and to not give up. Even if it wasn’t EDS, I still deserved an answer and to be taken seriously. I still deserved to be taken seriously. With the help of my peers in my community, I was able to finally find doctors who saw beyond my size.
Once doctors finally took the time to think outside my plus-size box, I started to get different tests and actual answers. I got my first tilt table test last year where I was diagnosed with POTS. I was then referred to a geneticist who specialized in connective tissue inherited disorders where I was diagnosed with hypermobile EDS and validated for 27 years of profound suffering.
I was diagnosed with small fiber neuropathy with a simple nerve conduction test and skin biopsy. I found out that I am, in fact, malnourished due to declining health and concerning gastrointestinal issues. Doctors started taking responsibility for my health. Doctors found out I have Hashimoto’s disease as well as realized many of my medications cause weight gain. The second I got a doctor who finally diagnosed me accurately with EDS, other doctors started to listen and my co-morbidities are being discovered at a rapid speed that should’ve been happening to begin with. The world needs to know that plus-size people can have EDS too, and we are just as worthy of receiving accurate diagnoses and treatment.
Representation matters, but most importantly, representation of all bodies, all races, all ages, all classes, all sexualities, all genders matters because we cannot have accurate treatment or research if our research is inherently biased, to begin with. In order to truly know how many people are affected by such a horrific disease, we must rid ourselves of our judgment-tinted glasses and see people for who they really are.
Plus size chronically ill people exist, and we are just as deserving of treatment and diagnoses as anyone else. When looking for a zebra in a stampede of horses, we must find all zebras with all different stripes. EDS is not a one size fits all disease. We are everywhere, and we must not wait any longer to be seen or heard. We cannot suffer any longer. We will always exist with every other zebra out there.
