The Truth about Representations of Disability and Chronic Illness

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.

A screenshot of a Tweet by Poppy Field, which reads: “I hate how it’s radical to believe a disabled or chronically ill person, but I believe you. 

Please don’t doubt yourself or internalise recent media ❤️”
It’s not hard to be a decent human being about the things that you don’t understand, okay?

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

8 thoughts on “The Truth about Representations of Disability and Chronic Illness

  1. Trying to justify or defend these illnesses or conditions is exhausting, all the while also just trying to get through a day or an hour too is just….well, you know. So there are these sites. I don’t know if you know about them, or how much you know about them, but they are for bullying, There was one time, and only one time, that I put up a video and demonstrated what happened with my cerebrospinal fluid and paralysis. And so someone decided to add my video to the bullying site so they could talk about how I was faking it and “expose” me. This happened while I was also waiting for my court hearing to determine disability, a very dark and desperate time when I had no income and doctors were also bullying me simply because my case is so rare that they don’t know what to do with me.

    Anyway, there it all was. They were horrible. Talking about how I was just whining and there was no way possible that I was having paralysis, even though I showed everything on the video. They talked about how I had no right to exist. A very good friend of mine actually read the comments and told me to stop reading because of how awful it got. But then he said that some people came to my defense and said that it was obvious that it looked legit.

    We walk around and say that we are fine because we don’t trust anyone. I think that’s what it boils down to. Why trust? Even people who know every bit of our struggle can let us down (including doctors who are familiar with disease processes). That’s why we say we are “fine.” Everything else has been taken, except that last little bit of intimacy. Fine.

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    1. I’m so deeply sorry for your experiences, for what it’s worth. You deserved so much better then — and you continue to deserve better now. It breaks my heart to know that the people working hard to amplify voices and offer kind words of solidarity are the ones facing such disgusting attacks on the very essence of their beings. It’s not okay with me and I will not be silent about it.

      Before I met you, I didn’t have many people who I could relate to. I would genuinely just sit in my room all day and stare at the wall. Okay, I still do that now, but there’s the comfort of knowing that your wisdom is always in my pocket. You are SO important. I’m ready to listen to your stories and offer validation literally any time. Although time has passed now, I want you to know that I SEE YOU. Your body is not very kind to you but please remember that you never have to justify yourself to anyone. Ever.

      I totally know what you mean about trust, which is yet another reason that I’m grateful we are friends. I hope you know that I have absolutely got your back, even on the other side of the world. There are so many more bright days left to see 💜

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      1. As always, you have the kindest of replies. It is amazing to me that as much as you have been through, you still have this lion heart. I’m so excited to see what comes up next for you, because honestly, I don’t think it’s going to be staring at your walls. You deserve a wonderful life too. And don’t worry about me; I don’t feel bullies anymore.

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      2. I think that it’s really important to try and keep a soft heart in the face of trauma. It’s a scary process because there’s always so much more vulnerability involved. I have SO MANY deep feelings. But I only ever want to try and be a consistent reminder that the world isn’t eNTIRELY terrible. Be a good person. Maybe that’s all I can do, which is kind of satisfying in itself. Thank-you so much for genuinely believing that there is more to come. The idea means everything to me. When I allow myself to think about bursting outside of these boundaries, my life begins to make sense, you know? It’s a beautiful thing and I hope that it will come true.

        PS: I’m glad that you have healed from the bullies, as much as anyone can. They do not deserve to occupy space in your mind ever again. I insist that you only surround yourself with certified Good Vibes from this moment forward. It is an honour to stick around 🤍

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  2. The way the programme was made ended up being so harmful. The BBC also used content without permission and many of our disabled blogger friends have really struggled with what’s happened. I suggest everyone complains to both the BBC and Ofcom, there’s some amazing guide on Instagram that show you what to do. 💕

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    1. Hiya. Firstly, I’m very glad that you have found your way here. I took a brief look at your page and want to say that I think your journey is such an important one. I wish that issues around pregnancy and/or parenthood were spoken about more widely and it hurts my heart to know that there is such an expectation that we won’t be able to raise children etc. Ugh. About the documentary: I agree with you wholeheartedly and I can’t believe that they were able to get away with SO MANY microaggressions in one piece, you know? But still. The fight continues and I’m determined to make sure that our voices will only continue to get louder 💖

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  3. I like that Miss Lion Heart I hear you Danielle, please don’t diminish your symptoms so you are not seen as a burden!! You’re amazing, so interesting and articulate…keep sharing your thoughts and understanding.

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    1. As always, thank-you so much for your kind words, Jane. I really appreciate that you always take the time to hear me, too. Talking about these things so openly can sometimes feel kind of like shouting into the void without people like you. I hope that you’re doing well 💕

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