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EDS and HSD May awareness: week 4
Day 20-POV: Living With EDS or HSD
I get up this morning and my shoulder cracks. At least I’m lucky, the joints of my fingers came back into place overnight. I have a headache. I’m thirsty. I need to remove the goutiere that I’m wearing to avoid bruxism and relieve my jaw. My jaw still hurts, though. My doctor told me to make an appointment with a physical therapist who specializes in TMJ. I get up and go have my breakfast. Acid reflux is hitting me and I still have the day to spend and finish revising my classes for my exams on time. Arg...
Day 21 – Representation Matters
Representation matters because I think that without the biases of doctors, we would be better diagnosed. It’s not because we are young, because we have a different skin color, because we’re a woman, a non-binary person, etc... that our feelings aren’t valid. hEDS and HSD do not have biological markers defined as for other diseases. The doctor must therefore diagnose according to a list of symptoms that are most often invisible to him. We don’t live with them after all. However, because of their biases, they do not listen to us most of the time, which often leads to medical wandering or even worse, often psychiatric diagnostic errors with consequences for our health. That’s why representation matters.
Day 22 – A Resource That Helped
First, I would say the stories about the mighty as well as the playlists (chronic pain and disability). Then, it’s the website of the elhers danlos society that gives interesting advice. Then I will look at the websites of associations specializing in EDS and HSD. But the first two are more than enough in my opinion.
Day 23 – What Earlier Diagnosis Could Change
Early diagnosis would help with mental health already. But I think that, at the same time, to reduce the time spent on medical care, we should improve the way of announcing the diagnosis. I don’t know about you, but I found the diagnostic announcements very traumatic because they just say: "you have X and goodbye." There are no explanations given. For me, my diagnosis of HSD was shocking because the doctor didn’t even tell me or my parents, but I learned it by reading a report from the appointment with this specialist.
Day 24 – Something I’ve Unlearned
Sometimes, despite everything you are told, just trying is already enough. Taking one step after the other, even when very small, is enough. You were just able to clean the window of your room but nothing else, it’s OK. Your house doesn’t look like a Pinterest board, it’s OK. You feel good in it, that’s fine. Trying is incredible, and if you succeed, even better. You fail, it’s not a big deal, maybe you’ve learned a limit or another way of doing things.
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