Hello! Since it's EDS/HSD awareness month, I figured I'd take some time to talk about the severe disorder that plagues me every waking hour of my life.
Disclaimer: I do not speak for the entire EDS community and my experiences are not universal.
Ehlers-Danlos Syndrome is a connective tissue disorder. It's genetic, incurable, and degenerative. It can cause a lot of problems, including frequent dislocations, POTS (postural orthostatic tachycardia syndrome), heart problems, chronic headaches and migraines, dietary issues, and chronic pain. There are a lot of different subtypes, including hypermobile EDS, vascular EDS, and classical EDS.
It is incredibly painful. I honestly cannot remember the last time I wasn't in pain. It affects everything from my diet, to my mobility, to my hygiene, to my hobbies, to my sleep. I sit down to shower and brush my teeth, I've cut a lot of gluten from my diet, I sleep with several different pillows, I have to accommodate all my hobbies and arts. My mobility aids include forearm crutches, canes, braces, KT tape, and more. Other disability aids include medications, my emotional support water bottle, ice and heat packs, and prescription sunglasses.
I have hypermobile EDS. But the least severe form of a severe disorder is still a severe disorder.
And I am in constant pain.
Everything is a chore, everything is an energy-draining task. Showering takes planning and involves gathering a small army of aids.
Leaving the house takes meticulous planning--which mobility aid will be most helpful today? What braces and supports do I need? Have I eaten enough salt? Will I need my gatorade? Have I refilled my emergency meds lately? Is the place I'm going accessible? And so on.
Engaging in my hobbies takes thoughtful accommodations. I have to be conscious of how my fingers bend when I crochet. I should be aware of how my hands and fingers and wrists are feeling while typing (like typing this post). I have to put all my braces on and bring my stool into the kitchen when I bake. I have to pack my backpack full of disability aids if I want to take a walk. I can't play viola anymore because it isn't safe right now.
I'm so tired. Every day I wake up and I am so so exhausted. Some mornings, while I'm lying in bed and letting my body adjust to being awake, I wonder how the hell I'm going to do this for the rest of my life. Waking up to stiff joints, vertigo spells when I finally crawl out of bed, recovering from an eating disorder while not being able to eat half the food in the house, struggling to leave the house, almost passing out in the shower, going to bed with headaches.
It's hard. It's so fucking hard. I'm not going to sugarcoat this in toxic positivity. Trudging from one day to the next sometimes feels impossible. Some days, it's digging your nails in and refusing to let the depressive thoughts take over. Others, the depression does take over, and there's nothing to do but ride the waves of your grief for a couple days.
Fellow EDS zebras and HSD folks, I wish you all a safe and peaceful month 💖💖
To non-EDS/HSD folks, go learn about EDS and HSD this month!
The Ehlers Danlos Society website
All That You Can't See: Living with Ehlers-Danlos Syndrome
EDS and Why We Misunderstand Disability
Youtubers with EDS: Chronically Jenni, Jessica out of the closet, Izzy K DNA
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jacobvanloon
germansingergirl
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