Social media, patient-advocacy groups, and online forums have helped many patients with rare conditions connect to resources and to one another. Yet there may be pitfalls in relying too heavily on these tools. “There’s a long list of things that can be associated with Hypermobile EDS (hEDS) and HSD,” says Dacre Knight, MD, medical director of the Mayo Clinic’s Ehlers-Danlos Syndrome Clinic. “So, a great amount of anxiety can come when someone’s looking this up and thinking, Oh my gosh, I’m going to have Postural orthostatic tachycardia syndrome (POTS). How am I possibly going to live my life?”
Dacre Knight, MD cautions people to be careful with online forums. “You want to find a supportive circle online that’s solution-focused and not a competition of who’s the sickest.” While many hypermobile patients do wait too long for a diagnosis, finding the right medical providers can help. “Have an evaluation with an experienced clinician who can say, ‘Yes, you have hEDS; this is what to do.’ You get a diagnosis and get on a path of treatment,” Knight says.
Linda Bluestein, MD, a physician who specializes in hEDS, advises patients who suspect they have the disorder to lead with their symptoms during early discussions with their primary-care provider, rather than attempting to confirm a self-diagnosis. She also cautions people to be careful with online forums. “You want to find a supportive circle online that’s solution-focused and not a competition of who’s the sickest.”
Finally, Bluestein says, be conscious of the nocebo effect — how attention and expectation can affect symptoms. “At one point, I was on a Facebook group specifically about cervical instability and I was like, Oh, the back of my head hurts!” she recalls. “When my pain was at its worst, I was on the internet doing a lot of self-diagnosing, and that can be very harmful if we don’t have a good balance of information. I try to get patients to focus on functioning better.”
This was excerpted from “What Is Connective-Tissue Disorder?” which was published in Experience Life.
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