My journey with EDS began at birth. I was a low birth weight baby and I could barely keep any of my feeds down. I was very fussy and always dealing with some sort of GI issue or sickness. Many of my milestones were delayed. I didn’t walk till I was around 15 months old. When I started to walk, I was very unsteady and tipsy. I could never run correctly. I would always waddle like a little duck. My feet always turned out.
As I became older, the clumsier I became. The reflux I had when I was a baby never went away. Only more GI problems popped up and I was always getting sick. I could never walk or run in a straight line. I was always running into things. My first (shoulder) dislocation happened at 4 years old. My teeth were growing in all wonky and my mouth was super small. Dental overcrowding just kept getting worse.
In elementary school, I was always getting random bruises. I would always get cuts that would bleed more than they should. I was the kid always asking for a bandaid (I about got banned from them). Overheating and excessive sweating were always a struggle. Exercise made my chest feel weird and I never felt okay playing sports (which I believe now to be a protective mechanism). I sprained my ankle badly in 5th grade. It never healed and left my right foot pointing even further out to the side.
Then middle school hit. I began to have severe abdominal pain that would leave me screaming in agony. They said it was my anxiety and there was nothing that could be done. I began getting more and more breaks and sprains. I was dealing with a ton of pain. Migraines entered the picture. My mental health took a turn for the worse. I started getting dizzy whenever I got up. Shortness of breath and pain with exercise increased. I was getting hurt all of the time. I was told I was just clumsy. I passed out for the first time. I just couldn’t deal with the heat. I started noticing more and more that I just couldn’t keep up with everyone else like I wished that I could.
High school enters the picture. I busted my knee and it became unstable all the time. So many more injuries started happening freshman year. I started consistently passing out every 6 months and I had my first seizure. The migraines got much worse, but I tried to keep pushing through. I was still in braces for 5 years at this point. The symptoms all kept worsening. My hip started to slip in and out of socket, but I was told it was just growing pains.
Enter Sophomore year, 2020… As you might suspect, I got COVID. Things were fine for a bit until they were not. I came back to school after the lockdown. I passed out and was unconscious for 2.5 hours. After 1 EKG, I was told it was a plain old vasovagal response and was sent home. Whelp, then it kept happening. Fainting and Seizures were happening up to 50 times a day and I was unconscious more than I was awake. I got diagnosed with POTS.
That following summer, I passed out. When I was moved, my shoulder dislocated. And then it kept on happening. Finally, it clicked that something more might actually be going on. An orthopedic PA decided to check me out and said hey, you are really hypermobile. I was then brought back to an instagram post I saw discussing the connection of POTS and EDS. A light bulb switched on. I mentioned EDS to a couple of my doctors, but they all said there was no point in getting a diagnosis. What will it do if there isn’t a cure? But, I wanted to know that my pain wasn’t all in my head. I wanted the ability to make sense of all of my symptoms.
After 3 more years of fighting, I finally got diagnosed. Cue that big sigh of relief. I still have so many things going on. My heart, brain, stomach,intestines, lungs, and joints are all noticeably affected. Hospitals have become my second home. I accept the life of a human pin cushion. This is not an easy journey and I would never wish it upon my worst enemy. BUT I finally know the why to many of my struggles, that it isn’t all in my head. It has helped shape me into who I am today. So, I continue to press on and ignore those who say I can’t. I use that negativity as a fire for my passion. I can’t wait to be a nurse someday soon to advocate for people like me. What a joy it is to turn such a difficult life into one full of blessings and happiness!
