Published: 19/01/2023 Tags: Stories

I’m a critical care nurse and I love what I do

I’ve been dealing with pain since my youth. Every time I’d try to address it would be labeled as “growing pain” or I’d be called dramatic. I carried on doing high-impact sports like kickboxing and softball without understanding what my body was going through. Fast forward nearly 15 years later; I’ve finally graduated nursing school and I’m exactly where I want to be in life.

My pain at that point was notably worse, I lost the ability to do all the activities I once loved to do. I was always tired, my joints were unstable and dislocating, my digestive system was in shambles, and much more. I was receiving all these different diagnoses for the symptoms I thought were all unrelated and none of them really resonated. I was angry at the world and my own body for seemingly failing me. It was at that point that I knew I had to find an answer for why I was having all these different symptoms and why they were worsening over time.

Since my doctors at the time couldn’t figure it out, I took to Facebook. I made a post in a “mystery illness” group thinking I’d receive a bunch of different answers, but all the comments were some variations of “have you heard of EDS? This sounds like that”. I had heard the term Ehlers-Danlos syndrome once in my whole life and it was from Grey’s Anatomy. One of the patients in the show was suspected of being some kind of alcoholic and was told to stop partying and maybe she’d feel better. It was a bunch of back and forth between the patient and the doctor, then the patient got up to leave and the doctor grabbed her arm to stop her which dislocated her shoulder! That didn’t sound like me though… did it?

I immediately started researching out of curiosity, and wow… something finally made sense! While my dislocations didn’t look like the ones on Grey’s Anatomy, what I was experiencing was in fact dislocations and subluxations. This explained my headaches, my stomach aches, my pain, my fatigue, and everything else! I spoke to my primary care doctor about my findings, and it led to an almost yearlong diagnostic process. This process cost me so much time and money, but it felt worth it.

After much poking and prodding, I was finally diagnosed in May of 2022 at 24 years old. Finally having my answer was so bittersweet. I finally got to know I wasn’t being dramatic or a hypochondriac, but this confirmed that something was, in fact, going on. I was a new nurse… how was I supposed to continue working like this? What did the future hold? Can I ever get better? While I still don’t have those answers, I found the motivation to help others like me. As a result, I started an NYC/tristate-based Facebook group for people with EDS. We started having monthly zoom support meetings and sharing resources. It’s made this tough time less isolating and confusing.

Present day, I’m a critical care nurse and I love what I do. Alongside that, I’m now working on becoming an advocate for people with EDS and those with disabilities in general. Outside of the more serious things, I’m a clown. I’m always laughing or finding ways to make others laugh. Sometimes when I’m having a really bad pain day and all I can do I lay in bed, my wonderful partner comes and does what he can to make me laugh and he’s always successful. I have a beautiful family with him and our spoiled pets. I’m also blessed to have understanding and supportive friends and family who back me up and are always making sure I’m taking care of myself. Receiving my diagnosis felt like it closed doors for me when it opened brand new ones.

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