237 ~ Making the world listen – 2/2 ~

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.

Aaliya held an enlightening and tear-jerking series of Ehlers-Danlos Syndrome awareness posts designated to the month of May, if you haven’t read it, here is the link to her account to be more aware about rare – in the future as well!

https://instagram.com/liyae3?igshid=1fh1j4gvk6uj4

Be aware about Veds – Vascular Ehlers-Danlos Syndrome: https://www.instagram.com/tv/CANecOVgB3c/?igshid=6n8ilmhdhcjv

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