Greetings, squadlings!

It has been 460 days since I was officially diagnosed with Ehlers Danlos Syndrome Type III. The past year and then some has made a lot more sense than years in the past–I finally knew why. I had however many problems, but I knew why they were there.

The chest pain was Costochondritis, which is common in people with EDS. The random dizzy spells were caused by my blood pressure dropping. The fainting is common with EDS. The joint pain, the migraines, the nausea…all of it makes sense now.

That doesn’t make it any easier.

At the beginning of 2021, I had a conversation with the doctor who diagnosed me: he asked me if I considered myself to be disabled. I said no. He said he did. I didn’t think much of it.

As 2021 went on, and I lived my life with a diagnosis, I realized something: Ah, shit. I am disabled, aren’t I?

After talking to my primary doctor, she confirmed that, too: yep, you’re disabled.

There are some perks to being disabled–at least I get good parking. There are other things that annoy me: people acting like I can’t take care of myself is one of them. I know people mean well, I really do, but for the love of god, leave me alone. I’ve been dealing with this for 24 years, I can handle it myself. Having people constantly ask “are you good? Are you okay?” gets really old, really fast. If I’m not okay, I will let you know.

I also wear a medical ID, in case I faint in public before I can get to my medication. Sometimes, when my pain is at really high levels, I’ll even walk with a cane. You won’t believe how many people have asked me why I have a medical ID or a cane: “What do you have a medical ID for?” “Why do you need that?” Well, random woman at work, let me tell you all about my medical history right here, right now. How much time do you have?

Aside from random middle aged women asking invasive questions, like I said, there are some perks: I’m finally in a physical therapy treatment that’s working. I have medications that can handle when my symptoms get unbearable. I don’t have to wonder why I feel like death all the time. I’ve finally -mostly- learned how to handle my own issues. It’s still a learning process, but I’m getting there.

That being said, it still sucks.

There’s a strong anxiety portion that comes with being disabled. Even when I was a kid, I refused to go to sleepovers, even at my best friends’ houses. I would be that kid at slumber parties who called their parents at 11pm, sobbing in the kitchen with my friend’s parents.

I’ve had moments where I’ve been away from home and had a symptom flare up (mainly, everyone’s favorite, heat exhaustion). Truthfully, there’s still a part of me that worries that, no matter where I go, I’ll have a symptom flare up–for a while, I was basically terrified to go anywhere but my work. I was so scared something would happen. There’s still a bit of that in me, to be honest–I don’t leave the house, even for ten minutes, without all my medications. When I went to Chicago for only a few hours in October, I had a pill cutter in my backpack, fully prepared to take my panic attack medicine. Surprisingly, luckily, I didn’t need it. I was fine that day–my pain levels were low, and I had a lot of fun exploring the Museum of Science & Industry with my sister. Was the thought that I could have a flare up in the back of my mind all day? Yes, of course it was. That being said, it was at a point where it wasn’t so bad where I needed medication. That moment was so big for me, I actually texted my therapist about it.

We’re getting there, people.

Overall, the past year has been a learning process–not just for me, but for my family, too. I wasn’t the only one who had to look into EDS after I got the diagnosis. At this point, there’s no use feeling sorry for myself or wondering what could have been. It’s just another part of life, and I’m just going to have to deal with it.

Be well, squadlings.