Advocating Doesn't Stop at a Diagnosis
Hi Stretchy Pals, Chaos Coordinator Jess here with another Jess Special! This time I'd love to talk more about my personal health care journey and how important it has been for me to continue advocating for myself.
It may seem like the end goal for anyone with a complex medical condition or chronic illness is to get an accurate diagnosis. While this can certainly help inform healthcare professionals and guide them on how to treat certain conditions and symptoms, it doesn't mean everything will be smooth sailing. Having a certain diagnosis code or even multiple different related diagnoses on a chart may be nothing more than a few numbers to some healthcare professionals. There's the possibility of them being not good partners for your care but there's always the chance they are unfamiliar with the condition and what it means for your body!
Overall, getting my EDS and dysautonomia conditions formally diagnosed was fairly easy once I found the right care team. Some of the doctors I sought out were listed in the EDS Directory or were part of an unofficial care team for EDS patients in my surrounding area which made for a relatively smooth conversation each time. I know my experience does not reflect what everyone has and I have been very fortunate, but I do still have a lot of work ahead of me in having to educate different medical professionals who are unfamiliar with the conditions or how they impact me.
Recently, I've been navigating issues with thyroid levels where I had to fight to be heard. I pushed for multiple rounds of bloodwork and though my numbers were either way high off the charts or just barely within “normal” range at the highest point of the threshold. This told me things were actually off and I had to urge my doctor to look at it from a different perspective knowing I had EDS, bringing medical articles and journals with me for reference. As that doctor in particular was not part of the new EDS-educated care team and does not have any other EDS patients, it took multiple visits with me doing most of the educating before I was put on a new medication as a test. They didn't expect to see any major results but instead it brought me well below my previous readings! In that time I found an EDS friendly endocrinologist who immediately confirmed what I suspected and helped me educate the first doctor, who I don't fault at all in the end. They were following the guides put in place for what normal readings should be and hadn't yet started to think about what it means to have someone that doesn't fit within the lines.
Advocating for yourself isn't only related to healthcare either; I have to take the same approach sometimes in my personal life! Though my immediate circle knows of my related diagnoses and generally what they mean, it doesn't always translate to them understanding how it impacts me. Being asked to do things that fall outside of my capacity during a flare up and needing to explain I'm not being flaky has been a common issue. It's not always easy, but it's important for me to be able to have these conversations and continue speaking up for myself.
You've got this! 💜
Talking about EDS
Known as @CortDoesScience on social media, Dr. Cortney Gensemer has & is researching EDS. She put together examples of how you can discuss HSD/EDS, dysautonomia, & more with others to help them understand your experiences.
Seeking a diagnosis
Everyone’s path is different, some may want a diagnosis while others don’t! For me, it was important to have that dialogue with my care team so I could continue to advocate for myself going forward. Jenna has a video on her YouTube channel going over the pros and cons of seeking a diagnosis and talks about her personal experience.
Work with us
Having the right team makes all the difference when managing your health. The Stretchy Squad is here to help you manage hypermobility & dysautonomia! This can help better prepare you for conversations with other healthcare providers.
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This blog is written based on personal experience and is not medical advice. Always ask your doctor for individual concerns and support.