Yes, I’m chronically ill. In fact, I have several long-term health conditions, many of which even close friends are unaware of. Yet, despite being a public speaker and activist, I find myself hiding away my illnesses.
There is a huge pressure on activists to constantly reveal our burdens. This is partly due to the fact that we often choose to share one aspect of our life in so much depth. So, why not share everything else? We find ourselves pressed with questions, both from well-meaning educators, and from those who have a voyeuristic fascination with our lives.
When you are non-binary, the fascination with your body is pervasive. The media and random strangers on the internet come to believe they have the right to ask anything they wish. Sometimes, the temptation to answer back is too high. Sometimes, it’s a case of batting off incessant questioning, even when we shouldn’t be faced with that expectation.
Growing up, I was taught that things should ‘stay in the family’, i.e. no one should know if you are suffering. This created a lot of internal strife for me. I found myself torn with no one to confide in but myself. This, in turn, led to a lot of silent days in my room. I don’t blame anyone for this, to be clear. But I think I understand why it’s important to me that I am more open now.
There is a huge pressure to be mentally and physically well. I was born with facial palsy on the left side of my face, and I felt like I had to prove myself to be successful ‘in spite’ of it. This was only because I had random people coming up to me and apologising for the way I was born. This pity fuelled my self-hatred. Although I was confident, a natural performer, I found myself stuck questioning my identity.
I couldn’t tell if I was someone who celebrated my uniqueness, or repressed it. This became more obvious as I grew up. I played ‘heads down, thumbs up’ with one eye open, scared I’d be accused of cheating. My classmates never teased me though, because they didn’t notice what they had known their entire lives. Yet, as an adult, I found myself unable to close my eyes on public transport, worried that people would stare. I remember my teacher telling me I should use it to my advantage in the play I was performing in, but still found myself panicking about what everyone would think.
It seemed like I had been taught to be ashamed of my body and hide it. The stretch marks, the hairiness, the body rolls – they were all things I shouldn’t talk about. In the age of social media, where we tweet everything from our bowel movements to the announcement of new government policy, where does my repressed self fit in?
Turns out, I’ve got blogging to go to. And you’re probably sat there wondering when I’m going to declare the things I have.
So here we go:
- Kinda obvious, I am on Twitter a lot after all
- What’s life without panic attacks? I wouldn’t know!
- It’s real, else I wouldn’t be in pain/fatigued
- Chronic urticaria
- Worth noting this is accompanied by wheezing and intercostal pain for some weird auto-immune reason!!!
- And contact dermatitis but who cares!
- Facial palsy
- I did activism on this but sure, go ahead, ask me how I survive!
- Permanent foot injury
- You don’t need to know more than that
- Love that hirsutism, the pre-diabetic thing, the pain, all of that
- Probably other things that I have totally forgotten about
- IBS, I forgot because I also have memory issues and brain fog and a bit of good old trauma stuff
Well, now that’s out of the way, let’s talk about some common issues that drive me up the wall.
No, I don’t need your special remedies
Once, a guy told me I should eat yoghurt he bought off the internet because it would cure my IBS. Damn, I need to scroll up and add that; I forgot I had it. Anyway, yoghurt from the internet? Is this the millennial version of the piracy warning?
You wouldn’t steal a car… so you wouldn’t buy yoghurt off the internet, mate.
I have been given all kinds of remedies that make no sense whatsoever but for the sake of not offending people who love me, I will decline from listing them. But they are definitely ridiculous.
No, I don’t have to be an activist on all those things
Hey, just because I’m an activist, it doesn’t mean I have to cover every single thing under the planet. I strive to be inclusive within my campaigning, but I don’t have to make myself part of every single campaign ever in existence. If anything, being a chronic illness spoonie means I get to take breaks, so please… give me a break.
I can make self-deprecating jokes
Really sorry that you don’t think I should joke about my conditions, but a little light relief for myself isn’t going to hurt me. If I’m not joking about my health, then I’m probably suffering more than usual. It’s my prerogative to make my life as easy as I can, so those jokes about me dying are for me to help me feel like life is doable.
I don’t need to be tagged in everything related to my illness
I know people who add you to groups and send you news articles related to your conditions. That’s not what I need. Pls.
I didn’t write this for ‘attention’
I wrote this because I want to start writing about these topics more. That’s allowed, and I can say what I need in whatever order I find most useful. This was just the push I needed to get started. To be honest, I’m too drained to even explain right now.
On this occasion, admitting the conditions I have is actually therapeutic. I feel like it allows me to be able to talk about issues that affect me in the future without having to worry about explaining that I have lived experience. I hope that some of the things I come to write will be useful for others.
In the meantime, thanks for dealing with my hiatus!
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