For those of you who don’t know, I just launched a very exciting music video and campaign called #StillStanding along with The ILC Foundation, supporting research into Ehlers Danlos Syndromes. You can watch it here, on Facebook or Youtube, or go to the campaign webpage to watch, learn and donate.
It’s been a huge, beautiful, project. It’s been a dream, and it’s been a challenge.
A couple of people have asked me about what prompted the campaign. This is my response.
Living with EDS, I’m automatically immersed in a war that I never wanted a part in. A war that’s so heavily one sided that it isn’t a battle. It’s a ravaging. People are dying and lives are getting torn to shreds. And no one seems to notice, or care.
Every second day, I see a post in an online chronic illness group, of someone asking what the point of it all is. They say that they don’t think they’ll be able to live this way much longer. They just want the pain to finally be gone. Sometimes, those voices disappear, lost forever to a world that never truly saw them in the first place.
I hear about families who’s lives are destroyed by a lack of understanding about connective tissue disorders and the unprompted bruising and injuries they cause. Families who's children are taken away on suspicion of abuse.
I know a girl who’s been almost completely bed bound for years. She needs the same surgery that I had. But her family is unable to afford to pay for out of country care, and we don’t currently have the diagnostic capabilities, research, or expertise here in Canada for her issues to be addressed in country.
I have never met a person with EDS who didn’t have to go through years of debilitating symptoms before finally getting diagnosed - most often due to their own research and persistence.
Right now EDS is a many headed monster.
It affects every system of the body, creating a whack-a-mole situation with new emergencies constantly popping up.
There’s no cure, and very limited treatment options.
There’s very little research to support our standard of evidence based medicine.
There is no funding being invested into developing that research.
In Canada, we don’t have the diagnostic equipment that’s essential to making certain diagnoses.
There is no funding being invested in enhancing our diagnostic capabilities.
There’s no public pressure to fuel these initiatives.
Most people have never heard of EDS and have no idea about the severe gaps in our healthcare system.
Doctors are trained to cure or to treat, not to deal with conditions like EDS where neither of those are options.
Most medical professionals don’t have a thorough, or even basic, understanding of EDS.
Our medical system isn’t designed to be interdisciplinary, or to handle chronic, multi-systemic conditions.
Many people can’t afford the therapies that might ease or improve their symptoms.
We are taught from a young age that illness is something that results in some sort of outcome. Most of the time we get better. Otherwise, we die. We aren’t taught that sometimes we have to live with illness. Sometimes, our condition is part of our genetic makeup, and the thing we are told to beat, is ourselves.
When I try to move through the world, I have to push with all of my strength against this giant boulder that is EDS before I can do so much as take a step. It’s hard and exhausting and frustrating and painful. And I’m one of the lucky ones. By mere virtue of the family I was born into, I have the ability to seek out of country care and access the services that enable me to live my life somewhat independently. Many aren’t so lucky.
Even with my luck, though, I had to fight for 4 years to get a diagnosis, travelling across the continent in search of answers and care. I’m still fighting. I’ve been mostly bed bound once again this past month, and so far no one has found any sort of an explanation for the sudden change, or offered any ideas in regards to further investigation, or any form of treatment.
People die of EDS complications. People end up in comas. People go into organ failure. People lose control of their bodies. People are prevented from living their lives.
And even now, I’m sure some people reading are doubting certain things that I’ve written. Because how can it be? Wouldn’t we have heard about this? This kind of thing doesn’t happen in Canada.
Except it does. In Canada, and all over the world.
This campaign is me, fighting for my life and the lives of those around me, the best way that I know how. I can’t physically take to the streets and I’m too fatigued to yell.
All I can do is offer a glimpse of my world. All I have is what I am. Here. Not always upright, but still standing.
I created this campaign to shine a light on what’s invisible. We can’t fight a war in the dark.
So please, watch the video, and please consider sharing the message and donating.
We need your help.
Thank you <3