About Maya
As a person with many chronic illnesses that are all intertwined - I feel very passionate about making a safe, inclusive and accessible space for other chronically ill students. This project was the first of its kind that I have organised - and it was such a rewarding experience to listen to, and learn from our wonderful community. The best part was being able to receive feedback directly from the students.
Today, I want to focus on two of my conditions: Mast Cell Activation Syndrome and Autism.
Mast Cell Activation Syndrome
Mast Cell Activation syndrome is a rare immune condition. MCAS occurs when your body can’t tell the difference between benign (harmless) external stimuli, and things that will literally kill you. I experience severe hives, breathing issues and even anaphylaxis from all sorts of triggers. Anything and everything from the scent of perfume to feeling stressed can and will trigger an episode.
Getting diagnosed with MCAS was really hard. It was only recently acknowledged and defined as a condition – and even now, there are only two specialists in all of Australia who are well versed on the condition. I spent years looking for answers, without much luck at all. It was blown off, or the symptoms treated without investigating or addressing the cause. Finally, I decided to see one of the two specialists via telehealth. Based in Melbourne, this immunologist video calls with me on Zoom and sends me blood and urine test request forms and my scripts. From the first appointment, he could tell I was really suffering. He said that MCAS can be difficult to test positive for, as you need to be in an active flare at the time, but even if it came back negative, he believes me and will give me treatment. Luckily, I was in a flare when I got the test done, and I got a firm diagnosis. Now, I get monthly immunosuppressant injections to help tame my allergic reactions to the world.
Autism
I wasn’t diagnosed as autistic until I was an adult, but I always felt like an outsider. I knew that I was different, and everyone else knew it too. We didn’t know why. I grew up AFAB, which adds an additional barrier to autism diagnosis. It is systemically difficult for AFAB people to get a diagnosis, especially in childhood. That meant that I grew up thinking that there was something fundamentally wrong with me – feeling like everyone was in on an inside joke, except for me.
Interestingly enough, when I was bullied as a child, I would get called autistic. When I got the diagnosis, the same people said “but you don’t seem autistic!” The irony still hits me like the first time! Autism doesn’t have a set look and almost everyone who says this is basing their image of autism on an autistic child that they know, or an autistic boy they saw in a TV series. We exist in all different variations. We aren’t all men. We aren’t all Spreadsheet Autistics. We aren’t all white. We aren’t all straight, or cis. In fact, a lot of autistic people identify as non-binary as our relationship with gender is often different to our non-autistic counterparts.