Last weekend I attended my first big event of 2022 with a friend. I've done many events like this before so I've picked up different strategies to get through them without flare ups. For some reason this time was a completely new experience.
Throughout the weekend I had severe back pain. Normally I'd be able to handle it well, but this time it was different. I'm not sure if it's because my spine has changed in the last 6 months or if I'd over exerted myself, but my pain was worse than it had ever been. At one point it felt like I'd pinched a nerve in my spine and I started to get really worried. Thankfully my friend was with me at the time and supported me through it until the pain had subsided. She then asked me "Do you need a walking stick?".
I immediately said I didn't, but suggested a fold out chair might be better. After the event I started looking into fold out chairs- most of them were connected to a walking stick so it had dual function. Due to the stigma surrounding young people using mobility aids I was extremely reluctant to purchase it.
My main fear was that someone would see me using it and say "You're too young to need that" or "You don't need that you can walk just fine". When you look at me I don't look like I have any conditions, but in reality I have low level back pain almost every day and when pain flare ups get really bad it can impact my ability to perform day to day tasks.
My worry also stems from experiences of judgemental people on public transport demanding that I give up my seat for someone else. On one occasion I was sitting on the train in the staff seats (they were the only ones left). A gentlemen in what appeared to be his late 60s was coming up the carriage. While on the phone I overheard people asking if he wanted a seat and he said no. As soon as I hung up my phone a female passenger behind me snapped at me and said "You're sitting in the priority seat. You should get up and give up your seat."
Now I wouldn't have had any issue with giving up my seat, but there were a few things that annoyed me. Firstly I wasn't in the priority seats- it was seats for staff members, but they were the only ones available when I got on the train. Second, we both heard the gentleman say he didn't want a seat and yet she chose to shout at me. Finally it was her judgemental tone. Throughout the interaction she was snappy with me and glared at me like I was a snobby kid who didn't know any manners.
Because of her tone and staring I felt like I had no choice but to move. I know I should have stuck to my guns and explained why I needed a seat, but I had a feeling that she wouldn't listen. I politely asked the gentlemen to take my seat and he accepted. The lady then asked if she could put my bags on the rack and I lost my cool a bit. I snapped at her and said no before leaving the train car. I ended up sitting on the floor for over an hour and it caused significant back pain for the rest of the day.
This experience has worried me but I know if I need something to help me I need to get it, otherwise I could make things worse for myself. Writing this blog has allowed me to reflect on my hope for the future. The one at the forefront of my mind is that people will not be so quick to judge people with invisible illnesses.