Why I Struggle To Talk About Certain Conditions

Disclaimer: The views expressed here are my own and do not represent my employer or any affiliated organization.

The complex chronic illness space is huge. Take hypermobile Ehlers-Danlos syndrome (hEDS) for example: there are numerous conditions and symptoms that have been reported to overlap in patients, and as you start learning about those, you get introduced to even more.

There are some conditions I don’t talk about much, and when I do, I sometimes struggle. The real reason is that there is a layer of understanding a condition that you cannot get from a paper, a textbook, or a medical or graduate degree.

You only get it from being embedded in that community, long enough to hear the misconceptions being corrected and the lived experience of patients.

There are things someone will never understand about hEDS, POTS, and MCAS without being in these communities. As a patient myself, I’ve had insights not just from my own experience but from being connected with other. What it has taught me is that most complex conditions: ME/CFS, endometriosis, long COVID, functional GI disorders, migraine, and FND, have complexities and nuance to them that it takes while to learn. And in these spaces, opinions can be strong. Patients have dealt with frustrations for years that never reach the educational material professionals rely on.

With some conditions, I’ve learned how to talk about them carefully. This is incredibly important to me in the content I make, because if I don’t acknowledge the actual patient communities insights, fears and experiences, I am not doing much more than any other science blog online.

So, I want to talk about a few examples, including ME/CFS, POTS, endometriosis, fibromyalgia and functional neurologic disorder (FND).

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