September is always a busy time in my house. As someone who grew up in a house full of educators and then spent almost a decade in post-secondary education, I still feel a sense of new beginnings and the start of a new year, even though I left school long ago. So, with that topic fresh on my mind, I wanted to touch on those new beginnings, because as exciting as they are, when you have a complex, chronic, or rare condition, there are other considerations that need to be made at the start of a new year.
In primary and secondary education, the major challenges were usually around ensuring the new teacher had some understanding of my condition. I went to a fairly small set of schools, and so I usually knew my peers in the class, so there were only ever one or two new kids who might ask questions about my marks. Everyone else had grown up with me and, honestly, no longer cared about that difference. However, as I tended to turn purple when I was cold, which was exceedingly shocking for someone responsible for children they didn’t know, I learned the hard way it was easier to just explain my condition to new teachers at the start of the year and warn them what to look out for, so there wasn’t the panicked, “Oh my god, you’re purple!” or freaking out about the nosebleeds later in the year. As tiring or daunting as this sounds, honestly, it was the best training I could ask for to learn how to advocate for myself. Learning from a young age to articulate my condition and concerns trained me for walking into medical clinics and speaking confidently to medical professionals who were willing to dismiss my concerns because they knew nothing about my condition.
Once I entered post-secondary education, things did change; my fine motor difficulties had now progressed to the point that I was registered as a student with a disability. This distinction ensured I was given adequate time to complete exams without damaging my hands or wrists. It also helped me get notes in classes where the professor’s talking speed was beyond my ability to keep up, which massively improved the amount of pain I was in daily. However, this distinction came with the responsibility to ensure all professors each term were adequately educated about my needs. They could not ask about my disability or condition, though I rarely had issues discussing it, but they needed to know I would take exams elsewhere and may have a note-taker in their classes. So, this meant that every new term, my first week was spent meeting with all 5-7 professors for each class/lab and introducing myself and handing in my paperwork.
The other major difference in post-secondary is that every class had new professors and different classmates, which meant the questions were much more repetitive than in childhood education. Especially those first few weeks, it sometimes meant having to describe my condition a couple dozen times a day to people asking what was on my arm, if I was okay, or why I had bruises. It is exhausting. However, in my experience, the calmer and more matter-of-fact I was about my condition in the beginning, the less trouble it actually gave me over the term. If people even had a basic idea of my condition, when I came in with laser marks or when I got sick, it meant there were far fewer questions throughout the term.
Overall, September is always one of those months that, as an adult, I am a little relieved I no longer have all these rituals; however, looking back on my journey through education and the challenges of discussing my condition so often, I see how I grew as an advocate. These opportunities, early in primary school, talking to peers and teachers, even in first and second grade, developed the skills that I now rely on when working with medical professionals and accessing the care I need. My parents gave me the chance to take the lead on these conversations, but were there to support when things went sideways or beyond my capabilities; this prepared me for when there is no backup, when my words are the only thing I can bring to a meeting to fight for care or treatment. It also gave me a chance to grow in comfort with my condition; the more I had to explain it and describe it, the less it felt like something happening to me, and more like something I had some level of understanding or control over; it gave me power back. So with those few thoughts, I hope everyone has a wonderful back-to-school, new year, or even just a fresh start if it’s needed.