I am Canadian and, well, here in Canada, we have maple syrup in abundance, and the glorious poutine which is chips smothered in gravy and cheese curds. Also, I’m HLA-B27 positive and this is my story.
So, my journey to diagnosis wasn’t the easiest as I’ve started my symptoms in my early teens, but my pain, and fatigue was attributed to my sport injuries, growing pains, hormones, and later in my early twenties, fibromyalgia. I’m the only one in my family to be diagnosed with ankylosing spondylitis and because there were no other family members with presenting symptoms it delayed my diagnosis.
Throughout the years I advocated for myself, and pushed through medical tests that kept coming back normal. I maintained throughout this process that there was something going on. I called out every pink elephant in the room as doctors and specialists repeatedly told me I was healthy. I was frustrated, depressed, I cried a lot during this time.
I felt like I was completely out of options, and caged in my own body as I couldn’t move more than a few metres from my bed while using a walker. I was in my final year of College and a few months away from graduation. Time was not my friend, but two months before my graduation I ended up with iritis and the Ophthalmologist connected everything, and I was finally diagnosed.
My pink elephant had a name, and now I have a course of action to tame it. While I was amidst getting aggressive treatment that included steroids, Remicade, lidocaine shots, and Methotrexate, I was still fighting pain and working towards walking again (I was determined to walk across the stage at my graduation). I was still not well enough to go out and be social, so I sought out different methods. At first, I tried online communities, it wasn’t a good fit. I tried Tumbler, nope still not for me. Then one day an ad popped up for World of Warcraft, and I said, ‘Why not?’
It was October and in game they have themes such as Brewfest, where folks wear goggles that gives you the effect of being drunk for quests. I put the goggles on my character, and oddly enough I had to capture pink elephants for a quest. The theme of pink elephants seemed to be very evident at this point.
Here’s where it gets interesting!
I ended up becoming a part of a guild, which over time became family. One day, I ended up adding a new person to the guild and little did I know that person would play a larger part in my life. He lived in California in the United States which is close to 3000 miles away from where I lived.
Over the months we became closer and I never disclosed my AS to him, I didn’t feel the need. Well that was until he said he bought a ticket to Canada to meet me. I won’t lie I panicked and was speechless. I broke down crying telling him that I’m disabled, that he doesn’t want someone like me, and I was just trying to squash any interest he had in me. He told me, ‘Can’t you see the pink elephant in the room? The pink elephant is that I’m in love with you! Your disability is only a fraction of who you are!’
If there is anything I’ve learned through my journey, or even a little nugget of wisdom that I can impart to you. Is that you are your own best advocate. You know yourself better than anyone else. The folks and community that you surround yourself with is what’s going to hold you up in times of need. The way you do things may not be conventional and that’s okay. You need to find what works best for you, and that can take trial and error, stick with it. AS is a part of you, but not all of you.
The biggest thing I’ve learned, and will say to you is that you are worthy and enough!
So, are you curious what I’m up to now? Well, I did walk across that stage and graduated with honours in Child and Youth Work. Juan is now my husband and living with me in Canada. We have been married for 3 years. We still play World of Warcraft, and I’m currently in University for Psychology in the honours stream.
I’ve also started a new project involving pink elephants, and calling them out, called Inclusive Community Engagement and Experience (ICEE). My team and I are bringing training and awareness about the disability community in the university, further empowering students and fighting ableism.
Aerie is a married, passionate child and youth worker, psychology student, AS warrior, disability advocate and activist, blogger and caffeine enthusiast all rolled into one. You can read her blog whimsyinx.wordpress.com or follow her Instagram @aeriekm17