MAKING THE WORLD LISTEN

Posted June 20, 2018

by Aaliya E.

I first read the words “Ehlers Danlos Syndrome” when I was fourteen years old. A life defining moment that I won’t ever forget.

It was late at night, well into my summer holidays, even so, I was meant to be asleep. Instead, frustrated and in pain I was searching the internet for clues, like any detective in the books I loved, trying to channel their ways of uncovering information and putting puzzles together. It seemed like an exercise in futility. I had spent a thousand nights before this searching for the exact same thing and had never come up with any answers, any diagnosis, that fit just right. But on that night my life changed.

A mother in America had written a story about her children having Ehlers Danlos, a genetic disease that they had inherited from her. She had never been diagnosed and with limited access to specialist doctors in their small town, the hospital eventually began to suspect her and her husband of abusing their children. Not an uncommon assumption when it comes to Ehlers Danlos because of the constant injuries, dislocations, scarring and bruising that are often extreme and don’t match up with the activity that caused it.

Reading that woman’s story that night clicked with me on a deep level like nothing ever had before. Here was somebody, a world away from me, who was going through exactly what I was. The symptoms, the pain, the injuries, all unexplained and confusing. This woman after years of searching had found her diagnosis and I, in turn, found my peace.

I spoke to my mother the next morning, made her read the story, and clarified that in my desperation I hadn’t just seen what I wanted to. We went to my paediatrician that same day. And just like that, my bubble popped. “If you had Ehlers Danlos Syndrome, we’d know.” He set aside my printed research and dismissed me. “We know something is wrong, and most likely everything that’s happening is connected, but we’ll probably never really know what it is.”

For him that was satisfactory. No need to be proactive, to find answers or treatments, we’d just roll with the punches as they came. Looking back, I sometimes question why I didn’t walk away then and there. Why didn’t I insist that we at least talk to doctors that had more experience with the disease? Why didn’t I ask why he was so sure that we would have known before then if it was EDS?

At the same time, I know the answer to that. Every doctor before him had questioned my sanity. And it wasn’t just doctors. From teachers to family members and even friends, I was accused of attention seeking, being a hypochondriac, having a low pain tolerance, being a moan. It was often suggested to my parents that my Type-A personality and need for perfection was causing me stress and it was manifesting physically. I would benefit far more from a trip to a psychologist than all these trips to the doctor. Thankfully my mother has been my champion. Picking me up, fighting for me, watching over me.

It took another four years, three spinal surgeries, and multiple other health complications to confirm what I knew in my gut. I had Ehlers Danlos Syndrome. Confirmed clinically by a professor of rheumatology in South Africa, and then again by a well-known rheumatologist in London.

In the thirteen years since I first read about EDS and the nine since I’ve been diagnosed, I’ve watched the EDS community grow. I’ve been incredibly grateful for the work of the EDNF and their determination to share information. It’s a priceless commodity for a girl in South Africa who can’t just up and move to places with better access to doctors that have EDS experience. I’ve managed, out of necessity, to build up a really great group of doctors for myself through much trial and error and although they don’t have much exposure to the disease or have opportunities to learn from a lot of patients, they’re willing to read through the endless papers I compile and do their own research. These are the front line heroes of my everyday life. The behind-the-scenes heroes are my parents, family and friends who have banded together to always make sure I don’t feel alone when times are toughest. These are the people who survived the EDS litmus test and didn’t bolt for the heels when the explanations got complicated.

With all of that, it doesn’t change the reality of living with this disease every day. My EDS has taken a hold of my body. With damage to nearly all of my joints from constant dislocations, subluxations, inflamed muscles, tendons and ligament damage, and severe spinal issues, the pain doesn’t stop. The tachycardia from my dysautonomia was constant and debilitating to the point that I had to have a pacemaker implanted at 25. A prolapsed mitral valve with regurgitation, severe digestive problems, issues with stabilising my intracranial pressure leading to blinding headaches, bruising, scarring, severe fatigue, open abscesses that took years to heal. And that’s only the beginning, then there are the precautions I have to take, I never leave the house without my lists- allergies (take up a whole page), diagnosed conditions (take up another), then there’s everyday meds I’m on followed by a list of surgeries I’ve had. Having it with me at all times can mean life or death.

Reading other people’s stories has brought me an infinite amount of comfort over the years but it’s taken me a long time to feel ready to start to write about my experiences. The outside scars I can explain and talk about. The first eighteen years without a diagnosis and feeling like I never fit in and nobody would ever understand my pain and desperation for answers, that’s much harder to put into words. Even though I had answers it wasn’t enough. I still find myself having to explain the severity of this condition, and that no two people are the same, that we all have EDS to varying degrees and the complications can be endless. If I was explaining this to regular people it would be one thing, but I find myself having this conversation too often with medical professionals who should know more. I had a doctor who told me that when he was in medical school, his professor told his class they’d skip discussing EDS because the likelihood of ever seeing a patient with it was probably nil. Another pointed out that with all my complications and extensive history, it really wasn’t worth his while treating me at all. If this is the attitude of some doctors, how can we ever hope to have any kind of social awareness and understanding of complex invisible illnesses?

If the doctors who understand the science of what is happening are unsympathetic, uneducated and unwilling to change, how do we ever hope to be understood and heard by our family, friends, co-workers etc?

This is not good enough. It’s not good enough for me and it shouldn’t be for anybody else out there searching for hope and truth. We deserve awareness and respect. We deserve kindness and dignity. Most of us have lost out on a lot of our hopes and dreams because of EDS. Personally, I had to walk out of my dream. I was in medical school at the University of Cape Town and unfortunately, my undying love for the sciences and understanding of medicine could not conquer my body’s overwhelming objections to such a rigorous schedule. Having to accept that I couldn’t have what I wanted no matter how hard I tried, that my body had limits I really couldn’t overcome through sheer force of will was shattering. And I’m sure most of you out there reading this can relate in some way. We have had to adjust to our own definition of normal rather than the world’s. That doesn’t mean we should be doomed to social isolation and made to suffer in silence. And the only way forward is sharing our stories and making the world listen.

 

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#MyEDS/#MyHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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