After a Diagnosis
Hi Stretchy Pals, Chaos Coordinator Jess here with another Jess Special! I wanted to share my personal experience with getting different diagnoses throughout this recent medical journey and how it has impacted me.
My EDS & Friends journey has been fairly new compared to the rest of the Stretchy Squad and it's been wonderful having the opportunity to experience it alongside people who are familiar with many of the factors. The additional guidance and opinions from those who have gone through the same thing really helps me understand what to expect! When I started I didn't really have much personal experience with chronic illness or any complex diagnostic process. All I knew is I was very quickly learning the symptoms I had most of my life were not really normal and it was important to pay attention to.
My path to a formal diagnosis was fairly simple but that was only because I spent a lot of time researching and preparing how to best initiate those conversations. When discussing it with my primary care physician I brought a printout of the Beighton scale and went through it with him as well as additional information about how EDS/HSD can present and what symptoms we've been looking into for years. With multiple points backed by science and medical journals or studies to prove my own suspicions, it made it an easier conversation. For the next steps in finding specialists (and in my case, an orthopedic surgeon) I started with the EDS Healthcare Professionals Directory because I knew they were informed about EDS/HSD and would know to look for the right things. Though I still do not yet have genetic testing confirmation of an EDS type vs HSD, my care team has opted to document my diagnosis as EDS.
Something I did not expect throughout this is having this complex, often misunderstood condition as a label being the thing that opened doors! In making appointments with specialists I was very frequently told there's no availability for new patients but once I told them I had EDS I was able to get in. So many of these providers left limited availability open specifically for EDS patients which I found really interesting. Appointments with EDS-educated providers often became an opportunity to revisit previous records to look at everything through a new lens. We ended up finding more conditions that weren't noticed years ago but became a consideration as they're often found alongside EDS. It also ended up opening up opportunities with insurance to approve more tests and imaging. Now that we had a documented reason for a path towards better health and preventative practices, it would be harder for insurance to say it was not medically necessary.
One thing that has been actually kind of fun is the formal diagnosis has given me the opportunity to educate providers who were previously unaware of the different conditions. A great example of this is when I was going through treatment for dental issues and my dentist was desperately trying to find out why things were happening. He was looking through history of xrays along with my recent bloodwork and all number of things outside of his scope to try and piece it together because he's the type of provider that wants to understand all aspects. When I got my formal diagnosis of a connective tissue disorder, I gave him a call to share the news and it was like a light bulb went off. Of course there are problems with my gums if my connective tissue doesn't connect so well! He excitedly asked how he could learn more and we developed a new care plan. It's been a wonderful learning experience for his entire team and though not for everyone, I'm happy to be a bit of a guinea pig here. Every visit with the hygienist is a joy because she is constantly asking questions about how things feel, what my recovery is like, and more so she can make adjustments with her treatment to be easier on me. That experience I get to have means more to me than having a provider that has all the answers immediately. Knowing this team is actively learning to improve to help me specifically and they're learning ways to possibly help other patients who may have the same conditions, diagnosed or not? That's incredible!
Throughout everything, I can say having each new diagnostic code added to my records gives me confidence in a weird way. It makes it so I don't need to fight to be heard; the providers can reference documentation from other medical professionals. It's no longer me trying to explain things with language I didn't have that results in providers giving me the catchall answers of it's probably anxiety, depression, PMS, weight, exercise, etc. Understanding what is happening with my body makes it easier for me to advocate for myself and ensure my care team has my back.
If you have any stories you'd like to share about your own journey, feel free to respond to this email. You've got this! 💜
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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.