Tag: EDS

May is also MECFS Awareness Month

And I have been quite remiss in not saying more about this over the years. No, really. Just because I happened to figure out and find all the many and varied causes of MY chronic fatigue, and feel I have “solved my case” so to speak*, this does not do justice to my millions of

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

Go slow until you know

Caveat: the following does not constitute medical advice, but merely education and illustration of one case. Talk to your doctors and other practitioners before starting or stopping any medical therapies, whether prescribed or over the counter. While there is no cure for the Ehlers-Danlos syndromes and the newly invented Hypermobility Spectrum Disorders (since 2017) yet,

No Group is a Monolith

I had absolutely NO idea when I fell down the Ehlers-Danlos Syndromes rabbit-hole back in 2012 suddenly landing in a wheelchair that I would end up falling down several other massively long rabbit-holes with yet other rabbit-holes attached, ack! Much less that I would stop walking for a year, and end up using crutches and

The Privilege of Diagnosis

Perspective: for background, know that I’m a well educated, hyperverbal and hyperlexic white allocishet normative woman from the western US, with all the privilege that entails, despite my poverty. I just want to recognize that at the start of this post about my diagnostic journey. So many others have even fewer resources to work with,

October is Extra

My long time followers may have noticed that I update my home page every month under News and Events to talk about whichever comorbidity or comorbidities (plural, often) it is the awareness month for. E.g. September was both Chronic Pain and Chiari awareness month. Two much too common comorbidities for all of our liking, sigh.

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