Finding work with invisible disabilities

When I was 22, a fresh college graduate, I got a job at a bookstore in Harvard Square. I was so excited to have a job that wasn't babysitting or washing dishes in the Tufts dining halls. And at a bookstore! The place where books live! What a dream!

Then I found out you weren't allowed to sit at the registers.

It would be almost thirty years later before I learned why that was so upsetting to me. I had never even heard of hEDS or POTS, and could not explain to my supervisor why I couldn't stand for an eight hour shift, or even really fifteen minutes. I just knew that the need to either sit down or move around would build, and with it anxiety, panic, and social overwhelm, until I felt like I was being tortured.

I think it was only a week or two into the job that I quit, mid shift, in tears. I couldn't explain to anyone why, and so it looked like laziness, lack of discipline, poor work ethic. Thirty years later, strapped to a tilt table at a semi-standing angle, I began to shake and sweat after fifteen minutes, nausea rolling over me, my heart pounding, vision slowly darkening, till they finally had enough data to lower me back down. The tech had to call in the doctor to make sure I was okay. A few months later a rheumatologist ran through the Beighton scale with me, and as I bent my arms, legs, fingers, etc. into the required angles she said, "Wow! Oh wow!" over and over again, and gave me 8 points out of 9. You need 4 0r 5 to be hypermobile.

For thirty plus years I couldn't understand why I could never hold down a full time job. But I was scrappy. I patched together part time jobs, started freelancing, pet-sitting, babysitting, self-publishing books in between my traditionally published ones, creating writing workshops, doing social media management for other authors. I managed to scrape by some years, and used my credit cards to pay bills when I couldn't. Not ideal, but it kept me independent.

Now, at age 52, I'm finally getting answers. There is relief in that, and a steady clicking into place (no joint pun intended) of confusing memories that now make sense. There is validation, but there is also deep grief in realizing that I am actually disabled, and I'm not going to be able to overcome this with willpower, or weight loss, or the right spiritual practice. I've known about these limitations my whole life, but having a name for them, understanding them as real disabilities, is a cognitive shift that takes extensive processing.

Sometimes that alone feels like a full time job.

If any of this resonates with you, and you're interested in learning more about hEDS (hypermobile Ehlers Danlos) and its connection to POTS (postural orthostatic tachycardia syndrome), the Ehlers Danlos society is a great place to start.