hEDS

hEDS and HSD – “complex syndromes”

~ Helen White ~ Leave a comment

A groundbreaking new study has highlighted the multi-systemic burden of living with either hEDS or HSD along with the considerable financial and circumstantial costs associated with managing these conditions and seeking appropriate medical attention in a system that still holds an extremely outdated, shortsighted and even biased concept of how these conditions and their symptoms manifest in people's lived experiences. Here's hoping this new study paves the way towards a complete overhaul of the diagnostic process and a much more accessible "joined up" approach to symptom management.

How long awaited hEDS diagnosis actually FEELS

~ Helen White ~ 2 Comments

So as it turns out, I'm not lazy, not hypochondriac, not a malingerer, not attention seeking, not making it all up, not interfering where I shouldn't, not feeble (far from it), not "over-sensitive" (ditto), not making a hobby or a hyperfocus out of illness, not collecting labels, not depressed nor anxious (except when the circumstances themselves pushed me that way), not trying too little nor doing it all wrong, not lost in self-absorption, not avoiding being a grown-up...or alive. I have been dealing with a complex multi-systemic health condition with as much grace and determination as I could muster on a daily basis. Unpacking some of the emotions of receiving a long awaited diagnosis.

Finally, a diagnosis!

~ Helen White ~ 2 Comments

Why is diagnosis just so darned important and cathartic when you are living with complex health; is it just because of finding the right treatment protocols (which is an important consideration since the advice for one chronic condition can be quite contrary to the advice for another, as I learned the hard way) or is there so much more to it than that?

Hypermobility is a spectrum disorder: its not all about subluxations!

~ Helen White ~ Leave a comment

News flash: hypermobility is not all about joint subluxations and is not as rare as they say, especially for women, but is actually a spectrum condition, meaning your most bewildering symptoms might be on that spectrum. You need to cease feeling like such an imposter in order to start looking hypermobility right in the eye because only then can you start to tackle it as a possible source of chronic pain, dysautonomia, GI issues and a whole host of other health mysteries.