The Importance of Community
Hi Stretchy Pals, Chaos Coordinator Jess here with another Jess Special! I have some storytime for you today, sharing a bit more about my own diagnostic journey while we give Jenna a much-needed break 💜
When I first heard the word “hypermobile” from a rheumatologist who I was seeing to look into my chronic pain issues, I had no idea what to expect. We were going through a myriad of tests over the prior year based on my family history and finally reached a point where there was not much more she could do. Her last suggestion was “well your joints are pretty hypermobile so maybe that could be the cause of it” but didn't have much in terms of resources for me so off I went to the internet! I found (and started working with) Jenna not too long after that which completely changed my path forward but probably not in the way you would think.
Humans are social creatures
It's normal for us to seek out connections in life, even if we're a self-described loner, introvert, etc. We naturally want to feel like we're not alone especially during difficult times. Navigating the medical system in hopes of diagnosing the cause of longstanding symptoms definitely counts as one of those difficult times!
Something many people have trouble with is accepting that wanting the support of others in any form does not make you weak. Knowing when you could benefit from interaction, comfort, or just a silent presence is a lifelong journey. If you're fortunate, it'll happen naturally and end up being a great help in many ways.
You're not alone
Once the algorithm did it's thing and brought me to Jenna's page I started to see myself reflected in many of the things she talked about. There were many times where I felt seen in a way I hadn't before, having those “…oh” moments when I found out certain things I've dealt with my whole life weren't just me being weird. Through the posts and the comments I slowly started to feel like maybe this was bigger than me; that many others were struggling with it too. That made me realize how alone I had felt all this time.
I'm a big lurker in online spaces until I feel comfortable so I didn't engage for a while but I started to feel less scared anytime I found myself in the HDS/EDS/dysautonomia/chronic illness communities. I finally felt like I belonged in this space. Once I started truly engaging and making friends, the welcome I received from every new person was consistently wonderful. The support from others in the chronic illness community is like nothing else!
Being validated by people I didn't even know gave me the confidence to look into these conditions more. Knowing that certain traits of mine were actually symptoms and watching others tell their stories of astonishingly similar situations reframed the way I thought about my own history.
Social media doesn't have all the answers
The world is a different place than it was even 10 years ago, with so many online resources and communities. While it's wonderful to find like-minded people and self-diagnosis is real and valid, what you find online should never be a replacement for medical professionals. If you have the ability, you should speak to your doctors about your concerns.
Thinking “oh that's me!” after a few 60 second social media videos was nice, but I didn't want that to be all I did in terms of learning about my health. Because I'm also neurodivergent there was a lot of moments where I doubted myself or second guessed what I was thinking because I didn't want to be looking for an answer so hard that I mentally molded my symptoms to fit these conditions just to get a label. There were lots of internal mental gymnastics I had to navigate, but in the end I armed myself with the knowledge of these conditions and went to medical professionals I trusted to look at things objectively. I never would've been able to do so without the support of those I found through this community.
Wherever you are on your personal journey, I wish you luck! I speak not only for myself but also Jenna & Maeve when I say the Stretchy Squad is here for you every step of the way 💜
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