Disabled & STEM: Reality checking

I’d never considered myself to be disabled until the last few years. I grew up as an Irish dancer, cross-country runner, climber of trees & rider of bikes. Slowly but surely, my ankles started turning purple, then they stopped moving properly. Then my knees hurt, all the time. Then a weird cracking in my neck started. By the age of 13, my shoulders started dislocating. My doctors told me I was double jointed and I’d grow out of it. Except, it just kept getting worse.

My first double knee dislocation aftermath: Crutches for the rest of my life!

I was diagnosed with Ehlers-Danlos Syndrome (Hypermobility Type) when I was 21, 11 years after I first went to a doctor about chronic joint pain. It took me 5 years of self advocacy to get them to pay any attention, and it was only once I started my genetics degree they took me seriously. EDS is a cluster of dominantly inherited connective tissue disorders, affecting collagen biosynthesis, stability, and regeneration. Some people’s cardiac tissue is weak, other people’s skin is incredibly loose and stretchy. Mine manifests in partial and full dislocations of my elbows, wrists, shoulders, ribs, knees, ankles, and hips. These partial dislocations happen daily, with minimal pain. Full dislocations are agonising, but I can often relocate myself. Saturday was a different story.

Suited and booted after my lungs shut down due to dysautonomia

I slipped on a wet pub floor and didn’t have my crutch to hand to stop me falling. I dislocated my left leg in a way I’d never managed before. I relocated it, and then collapsed from the pain, dislocating it again. This time I couldn’t move, or speak.

I waited an hour and a half for an ambulance, was taken to A&E, I think it went like this: x-rays, morphine, CT scans, morphine, gas & air, more morphine, was relocated, and sent home. I got back in at 7am.

Bossing it at the gym with my resistance bands, elbow crutch, & holter heart rate monitor in January 2017

72h later, I still can’t walk properly. The pain is so ridiculous I can’t stand up, sit down, or use the loo safely. I’ve “destroyed” my muscles that hold my leg in place, and have no access to physio to fix it, currently.

This is the harsh reality of being disabled. I got into the lab yesterday to do some basic stuff, and I’ll try and go again today. All I can do at this stage is keep persevering. I’ve got plants to water, growth rates to measure, seeds to sow, RNA sequencing data to analyse. It’s not going to do it itself, and I’m not going to let my disability stop me from doing it, either.

Me, very, very, very high on morphine, 1st October 2017

The only way I’ve found to manage my disability in academia is by laughing, having fun, and being stubborn. As time goes on, maybe I’ll hit the disability management jackpot, but for now, I’m gonna spend the day resting in bed, and ask someone else to help do my work with me. Science is unrelenting, and so is disability, but the biggest progress I’ve made in the past year is admitting when I need to put myself, and my health first.

Sometimes, the science can wait.

I am proudly disabled, I am proudly a woman, and I am proudly a scientist.



2 thoughts on “Disabled & STEM: Reality checking

  1. I have marfan syndrome with hypermobility, but I was originally diagnosed with EDS. It’s hard, but you seem to be managing quite well. I really enjoyed reading your article and I look forward to more.


  2. From one academic EDSer to another, thank you for making your illness (and your killer attitude) so visible. Among so many stories of decline and helplessness, it’s examples like yours which will empower us to keep living the lives we deserve, and push the rest of the world to make space for us to do it. Wishing you all the best. ❤


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