Having an autoimmune condition has introduced many challenges to me. Some of the main hurdles that I have had to overcome include learning how to manage chronic fatigue and pain levels, how to use crutches, and how to navigate my way through the Australian healthcare system. One of the biggest hurdles that I still face every day is the anxiety that comes with having the condition, and the impact that that would have on my health down the track.
Even before I was diagnosed with psoriatic arthritis, I faced all sorts of stares and received countless comments from people I didn't even know. Some of these comments were from people telling me that I don't need brace supports and that I don't need crutches because I'm not visibly injured. I've always had anxiety, but having invisible illnesses seemed to elevate this even more. I've had people close to me start to treat me differently just because I have this condition; I have had people outright tell me that I'm making everything up. Having a condition that was invisible to everybody else caused so much more stress and self-doubt than I already had; it made me question if I really was just making all of it up for the attention just like everybody had been telling me.
To me, it feels like I had just started to manage the comments that I received from people, or at least had learnt how to respond to them and handle them better than before, when I began to experience fainting and tonic-clonic seizure-like episodes.
When I had an episode, it wasn't like anything I had ever experienced before. I could still hear, but it felt like I was underwater where all of the sounds and voices around me were muffled and sort of distant. My vision first turned blurry, and then black. I could feel my heart beating as if it was going to explode, and within only a minute or so, the sound of it pumping was all I could hear. By the time I was able to realize that something was wrong with me, I couldn't move or speak. I was stuck frozen and could only stare at people and hope that they noticed that I needed help.
This step backward in my health undid everything that I had previously worked towards. People told me that I was having these episodes for attention. They told me that I was doing it to get out of class. They told me I was making everything up. I had already heard it all before, but this time it was for yet another invisible condition.
I could never describe to my classmates, friends and family how these made me feel emotionally. I didn't feel like I could even trust myself about if they were real or not because of what everybody else would say to me. They are terrifying to experience, but instead of offering support, many people greeted me with questions asking if I was making it all up for attention. The stress and anxiety only worsened the more that I heard these comments. As a result, they occurred more and more often over the next couple of years. What started as something that occurred once every few months, turned into every few weeks, turned into every week, and turned into every day or two within a year.
Due to the amount of class time that I had missed because of having seizures, or being unfit to attend school after an episode, I had contemplated dropping out of school. I had let go of all hope of going to university and didn't even do year 12 Victorian Certificate of Education (VCE) exams– the official senior secondary school qualification.
At the end of year 12, I was told that these seizure-like episodes were a condition called psychogenic non-epileptic seizures (PNES). It felt a little late to get a diagnosis, as I had just gone through half of high school without knowing anything about what was happening to me, at least I got an answer. My neurologist made sure to reassure me, explaining how I can still impact people's lives. This diagnosis allowed me to seek support to try to manage my anxiety, and it helped my friends and family to be able to support me more as well.
I graduated high school with a certificate of completion and nothing else. I ended up doing a Technical and Further Education (TAFE) course in Allied Health Assistance, a government-run education system in Australia for students after high school. I now work a few jobs, including being a speech pathologist assistant, despite people telling me that I couldn't just because of my invisible conditions. I’m not in school anymore and am happier and healthier than I have felt in what feels like forever. While I still use knee and ankle supports sometimes, I don't use crutches anymore and have only had 1 tonic-clonic seizure in 2023.