Last month, Lauren posted on social media 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 post, I was lying in bed, unable to do much more than half-watch the television and occasionally scroll 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 body’s temperature, which is particularly problematic on hot days, so I end up lying in front of a fan all afternoon.
While reading Lauren’s blog, I was reminded of a picture taken in 2016 that recently appeared on my Facebook memories. I was teaching full-time and attending my first national conference, speaking about my greatest passion: how teachers advocating for a better work-life balance shouldn’t be challenged regarding their commitment to their pupils. I was teaching children with severe or complex learning disabilities, a job 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 presented myself as a confident and capable young woman as I addressed the conference to propose an amendment to a motion. It was a moment when I was genuinely proud of my achievements!
What this photo doesn’t show is how my autism triggered a huge amount of anxiety before I stood up to speak. My speech had already been rewritten three times, and my hands were shaking as I stood at the podium. It also didn’t show that I was already living with chronic fatigue. At that time, my working day ran from 7:30 am until 6:45 pm, after which I would go home, eat, and then go to bed. My weekends mainly consisted of schoolwork, rest, and attending church on Sunday mornings. I didn’t have the mental or physical energy for anything else. Looking back now, it’s obvious how chronic fatigue was already the main factor in my life, as I wasn’t truly living; I was simply surviving. I gave all my energy to the children I cared about so much, leaving nothing for myself.
Seeing this photo brought up a mix of emotions; I felt the pain of losing a career 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 discovered 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 can now look back and see how limited my life was during the few years I was able to teach. Every bit of energy went into my work, and the levels of exhaustion I faced weren’t sustainable in the long run.
My life now looks very different. I have to plan my days carefully to conserve my limited energy. I need to consider how overexertion one day might affect the next, and that I can’t always follow through with plans, as my energy levels and ability to concentrate are not always predictable. However, since walking out of my classroom a little over three years ago with no idea I wouldn’t return, I’ve started to find new ways to use my skills and experiences to help others. I’ve developed new perspectives, made space for hobbies, and acquired a renewed appreciation for what is truly essential in life.
Objectively, people might see my life as being ‘worse’ than it was before, believing that my quality of life now is somehow less than it was when I spoke at that conference four years ago. However, I’ve come to realise that my life is richer in many ways. I’ve become part of online communities filled with people living with similar conditions, with whom I can engage on a personal level, and I also use Facebook to share my views on disability, chronic illness, and the politics surrounding these topics. This is something I never imagined enjoying, as I always considered myself a scientist or mathematician in the past, but now I’ve discovered the benefit and joy of expressing my opinions and passions through writing.
Writing over time, even if only for a few minutes, allows me to succeed without pushing my body beyond its limits. I now find ways to work around my restrictions, whether that involves writing nothing or writing a whole post in the middle of the night! I’m discovering new activities that give me a sense of purpose, as well as hobbies that are sustainable in the long run. This balance has become so valuable that I wouldn’t want to return to the way things were. I still live with chronic pain and fatigue, I still battle with the frustrations of relying on a wheelchair outside the house, and I still face ongoing challenges relating to the management of my ever-changing disability. But despite these struggles, life is perfect, and my mental health has never been better!
So, for anyone at the start of their journey who may feel like their life has been swept away, be kind to yourself. Over time, you will begin to make practical changes that better support your health needs. However, it’s equally important to take time to acknowledge the mental challenges associated with your new life, especially as your priorities shift and you begin to consider a potentially different future. It’s been three years and five months since I left my classroom, and I am still learning how to achieve the best quality of life possible. I’ve relied on the support of family and friends, as well as professional help from a psychologist – something you should never be ashamed of doing. Over time, I’ve accepted my new ‘normal’ and recognised how I can continue to move forward, even with the uncertainty that my illness brings.
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