Recently, the BBC aired a documentary, which promised to explore how damaging it can be when chronically ill people are accused of faking their conditions online. After hearing from the disability community that this was actually dangerously misrepresented, I decided to take a deep breath and watch it myself. In doing this, I wanted to make sure that I had access to all of the relevant information and could articulate my thoughts properly, you know? So, here we are. Let’s sit down and talk about it, please. Education is perhaps most important when we are given yet another reason to stop fighting.
The piece itself is only relatively short, so its narrative became twisted pretty early on. Rather than highlighting the lived experience of this toxicity, it worked towards adding validity to these personal attacks and focused on offering an understanding as to how these doubts might begin to materialise. Alongside this, there was also a conversation about how those with genuine chronic illnesses will exaggerate their symptoms online for attention. Frankly, I still don’t know whether to laugh or cry.
To a certain extent, I am blessed by the fact that I have a permanently visible disability, so my diagnoses are generally taken seriously. Like, I fit the description, right? Being disabled only seems to count when you look like me. Still, just the other day, a new consultant asked me if I ever experience pain in my legs simply from existing. Before my brain had time to properly process the question, I found myself telling her that I was fine and didn’t have too many complex health worries. Of course, that’s not true and I can feel the familiar hum of pain running through my legs as I type this. On Monday, I had a particularly tough session at physiotherapy. So tough, in fact, that I could have very easily cried about it. Yet, whenever she checked in with how I was feeling, I insisted that I was handling the whole thing well. I hate giving the world yet another reason to believe that I am an inconvenience, so would rather just quietly ride the wave instead. I’m working on getting better, but these experiences are important to discuss openly because they are only compounded by issues around chronic illness.
Because Cerebral Palsy is not enough, I also have Ulcerative Colitis. This in itself is not visible, yet it has a disabling impact on my life. When I say that I barely left my bathroom for two years, it’s not an exaggeration. One time, I was fed up of missing so many classes and decided to make an appearance on campus, despite not being anywhere near stable enough for that. It took less than an hour for me to realise that I should be at home, only for my lecturer to run out of the room after me and start asking increasingly invasive questions. This whole experience was deeply uncomfortable, especially since we really didn’t know each other very well. Throughout this time, I was constantly asked to provide letters and test results before any extension on my deadlines would be approved. I had to cancel dates, which always ended with being sent messages saying “you can just tell me if you’re not interested”, even when I tried to offer an explanation. Thankfully, I’m currently on some hardcore medication that has put me in remission. With that said, it does make my hair fall out, which has been an interesting thing to manage. So, what has been the point of this overshare? Nobody would put themselves through this on purpose, truly. It is hard enough. Even though things are significantly better now, I am tired all of the time and it’s a fight every single day not to believe that my life is being wasted. To believe that I can (and will) do more. We should be allowed to search for a sense of community without being doubted. Furthermore, on the very rare occasion that someone isn’t being entirely truthful about their health or the circumstances around it, let’s remember: Münchausen Syndrome is a mental illness and it deserves to be treated with care and compassion. The rest is not a competition.
In conclusion: do better. Also, if you have read this far, please take a moment to educate yourself on Micaela’s story and sign this petition, so that she can stay in New Zealand with her family. I genuinely looked into moving there when the pandemic first began and wasn’t allowed to even begin the process because I’m disabled. Really. This shit happens. Like I said, do better.
Owen, your stories deserve to be heard by the entire world. I’m so proud of you and I love you more than anything. xxx