Last month, Lauren posted a blog about July being ‘Disability Pride Month’ and the challenges surrounding the concept - especially when your disability impacts every part of your life, including your future plans. As I read Lauren’s blog, I was lying in bed, unable to do much more than half watching the television and occasionally scrolling through my phone. This is my reality whenever I get too hot as I have Postural Tachycardia Syndrome (PoTS), meaning my autonomic system doesn’t function properly and consequently cannot regulate my bodies temperature, which is particularly problematic on hot days, so I end up lying down in front of a fan all afternoon.

As I was reading Lauren’s blog, I was reminded of a picture taken in 2016 that recently popped up on my Facebook memories. I was teaching full-time and standing at my first national conference, speaking about my greatest passion - how teachers’ fighting for a better work-life balance, shouldn’t lead to them being challenged regarding their commitment to their pupils. I was teaching children with severe/complex learning disabilities, a job in which I truly loved; and through my union involvement, I was speaking up for both my pupils’ rights and my fellow teachers. I knew I was making a difference. I looked like a confident, capable young woman as I addressed the conference to propose an amendment to a motion. It was a moment where I was genuinely proud of my achievements!

What this photo doesn’t show is how my Autism triggered a huge amount of anxiety before standing up to speak, my speech had already been rewritten three times, and my hands were shaking as I stood at the podium. What also didn’t show was that I was already living with chronic fatigue. At this time my working day ran from 7:30 am until 6:45 pm, when I would return home, eat something, and go to bed; then my weekends mainly consisted of schoolwork, rest, and church on a Sunday morning. I didn’t have the mental or physical energy for anything else. Looking back now, it is obvious how chronic fatigue was already the driving factor in my life, as I wasn’t living, I was purely surviving. I gave all my energy to the children I cared so much about, leaving nothing for myself.

Seeing this photo brought up a mixture of emotions; I felt the pain of having lost a career that I loved. The pain of not being able to spend my weekdays in the company of some truly awesome young people. I felt the frustration of no longer being able to work, causing me to reflect on a future altered by chronic illness. Most importantly though, I felt hope because I have since found new ways to stand up for what I believe in and to contribute to the world around me. As much as I miss teaching, I am now able to look back and see just how limited my life was during the few years I was able to teach. Every scrap of energy went into my work and the levels of exhaustion I was facing weren’t sustainable in the long term.