Tag: chronic illness

Slow your roll with me

Huh? What do you mean by that, Jan? Well… I’ll tell you. As my long time followers know, I slowly uncovered and recognized and diagnosed both my autism, and more a propos to this post: my ADHD recently in the summer of 2021 at 54. Finally, I had some additional answers for my mental and

Check Your Imposter Syndrome

What ever does Imposter Syndrome have to do with my connective tissue disorders and autism, Jan? Well… possibly a lot. First off, what is Imposter Syndrome? Well, at its heart, it’s a feeling that one doesn’t belong in a given community, or at the level they are operating in a given community. Whether as an

EDS So White

So I tried to enlist zebras of color to share their stories of trying to get diagnosed with EDS/HSD three years ago in 2017. Because if you haven’t yet noticed, the EDS space is very white. And female. Mostly. Or at least what I’ve encountered so far is. (I’m in over 40 EDS related groups

Masking up against COVID-19

Edited to add in January 2022: There is no longer a shortage of medical grade N95 masks in the US as we had at the start of this pandemic in 2020 (see next), but, sadly many are reticent (hesitant) to wear them still. Also, KN95’s and K94s are 95 and 94% effective, whence their names.

Becoming Visible

Catch "We Are Visible", a documentary about EDS online this Saturday, and other days in the future.

Peeling the Diagnostic Onion

This isn’t going to be a post on how specifically to diagnose the Ehlers-Danlos syndromes (EDS) or Hypermobility Spectrum Disorders (HSD) per se, as that’s already been covered here. Rather, I want to draw attention to the many “red herrings” or false leads that we and our doctors often identify and manage to recognize and

Beware of Gatekeeping

I’m doing a lot of warning lately, aren’t I? “Beware of Hammer Syndrome” last month. And now, “Beware of Gatekeeping” this month. Hey, it’s October 2018 as I’m hatching this post, so it sort of fits with the Halloween mood, right? (Beware of Ghosts! Boo!) Editors note: This post was first made available in early

Beware of Hammer Syndrome

Hammer syndrome? Wait a minute Jan – you’re already talking about Hypermobility Spectrum Disorders (HSD), multiple Ehlers-Danlos syndromes (EDS), Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS) among other things. You could say you’ve put the “syn” in syndromes, don’t you think? So what’s “Hammer Syndrome”?? Good news: it’s not a disease

Weight and EDS and MCAD

This post is apt to be fraught with emotional triggers and landmines due to the nature of the subject itself. Weight loss and management have been a sore point for millions of people for many years, especially in the post war era in the so-called “first world” when big oil and the chemical industry radically

Seeking Zebras of Color

I don’t know how this doesn’t get more press or notice, but it’s become increasingly and glaringly obvious to me that all of the awareness raising around EDS, MCAD and “friends” (what I call the Chronic Constellation here) is almost exclusively being done by white people. And mostly women. Or at least that I’m aware