Honestly? My main coping mechanisms are mild dissociation from my body and pushing through/avoiding breaks. Taking a break in the middle of a “physical” project (like painting or hauling groceries) just makes me realize how incredibly fatigued I am, and then I feel glued to the chair and I have a very hard time getting up to finish the project. So, I’ve learned to not take breaks (unless I’m OK with quitting) and to tune out my body as much as possible. It’s no accident that I’ve mostly lived a life of the mind and feel somewhat alienated from my body.

Starting an intensive formal meditation practice several years ago was very, hmm, “informative”. At first I thought meditation was helping me learn to have a less adversarial relationship with my mind (i.e., to let go of the self-critical self-talk and self-judgments), but after a couple of years it dawned on me that the *real* thing was to stop having an adversarial relationship with my *body*. I had so much habitual “abuse” of my body (abuse seems like a strong word, but it’s also not wrong), and so many of my self-critical thoughts were actually about my body. It’s funny, because they weren’t the “typical” body image things that a lot of women struggle with (weight, fat distribution, old lady chicken arms), but they were just as virulent and just as pervasive in my moment-to-moment existence. I spent my whole life just driving my body as hard as I could, so that I could live a “normal” life. I was so angry that I seemed to get tired easier than other people, or had to pee more than other people (seriously!) or whatever way my body wasn’t performing in the way I wanted it to. 

Seeing this, and specifically seeing how that was also part of my meditation practice (where I forced myself to endure long meditation retreats that went beyond painful and deep into “causing long-lasting injuries”), made me realize that this was not a loving and compassionate way to be. It also made me realize that maybe something was “wrong” with me, which started me down the path to my eventual hEDS diagnosis. And it made me step back a bit from formal meditation practice while I try to re-learn how to trust and take care of my body.

It’s a lot of habit to un-learn. I still organize my life so that my paid employment gets my “best hours”, so that I can do my job and more or less pass for a normal person. It’s a steep price to pay, because it doesn’t leave me much “good time” in my non-work life. My best thinking hours are all on the clock, so it’s hard to engage in any of my intellectual hobbies (like reading and writing) after work. I use my sick time from work to go to all my medical appointments, and I use my vacation time to manage my fatigue (taking rest days when I need them, but also scheduling 1-2 week “staycations” where I can use my peak hours for my own projects instead of giving them all to work. This is a lifetime of habit to unlearn and I make progress only fitfully, with lots of steps forwards and backwards into the land of truly caring for my body.

I also cope by finding a community of folx with chronic illness on social media, and in particular I love memes! They so often capture some part of my experience, so I have a big folder with all the memes I find on the internet!

@ehlers.danlos

#MyEDSChallenge

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders