So this is something I haven't posted online.
For the last few years, I've been in so much pain. My whole body hurts all the time. Even as I'm sitting at my desk typing this, my knees are killing me. For the longest time I didn't know what to do fix it.
I tried to see doctors about it, but as my fellow woman in America know, doctors don't really listen to woman when it comes to our health. I was always brushed off. If I said my pain was unbearable, they thought I was being dramatic. If I said my pain was moderate but still noticeable, that it wasn't a big deal. No matter what I said, it wasn't enough for the doctor's to take me seriously.
I realized something needed to change last Summer. I was simply walking around the mall with my sister, when my knee's started to feel unsteady. It felt like they couldn't support my weight and that they were subtly moving around in a way they shouldn't. I was limping and by the time I was able to sit down, I was fighting back tears. A couple weeks later, I asked a friend who has their own chronic health issues for their thoughts. They suggested I look into something called Hypermobile Ehlers Danlos Syndrome.
To put it simply: Hypermobile Ehlers-Danlos syndrome (hEDS) is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body.
The more I looked into it, the more I realized that this disorder could explain a lot of the health issues I've had growing up. Not just joint related.
I was referred to see a rheumatologist, but she didn't know much about EDS in general. She tried to refer me to a genealogist, but since I'm hypermobile, they refused to see me. However, she did suggest this private practice that specializes in EDS.
I had my first real appointment today and I honestly wanted to cry. Finally someone who actually listens to me. She said that while they have to rule out one more thing, she believes I have EDS. I learned so much today and I don't feel crazy anymore for trying to make doctor's listen to me.
I've ended up walking with a cane when I'm out of the house for the past month and it's helped a lot. And I'm supposed to start physical therapy next week. Things are finally looking up for me.
I just want to leave off with this message:
Never stop advocating for yourself. Woman have to fight tooth and nail to be taken seriously by doctors. If I had given up all those years ago when I was trying to see doctors about my pain, I wouldn't have the answers I now know today.
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