Good evening, mighty warriors. Like every year, i like to follow the social media challenge of the EDS society. For the new ones, here is the concept: every day, a prompt around EDS and HSD is offered throughout the month of May. This year, I don’t feel able to follow him day after day, so I’ll make a big post on Sunday. I hope you enjoy reading them, that they will help you a little at least.
Day 1: the beggining of this journey : I am Wolf. I was diagnosed with HSD during my early teens after 13 years of medical wandering. My favorite animals are canids and large felines.
Day 2: then and now: Since the diagnosis, I have largely evolved from a sullen and annoying teenager who did not know they were suffering from chronic pain. Today, I try to be a more conscious person about my limits, my emotions and why I feel such things but also try to be more empathetic towards others even if sometimes it’s hard. I see HSD as a traveling companion, sometimes quite boring in my life.
Day 3 – One Thing That Might Surprise You: the link between autism and HSD. It’s what allowed me to finally be understood and accepted. I’m just not depressed because I’m disabled, but I was masking. Often, HSD is not really understood by those around us like all invisible diseases, so we are expected to be "productive" as society demands. Sometimes, setting limits, resting or choosing to be productive in your own way one step at a time is the biggest victory of a day.
#EhlersDanlosSyndrome #Autism #Disabled #ChronicFatigue #ChronicPain
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