Monday 1 May 2017

Spoonie Writer: Sick Olympics (And What That Means For You)


I've been a spoone for many years that I don't have enough finger to count with. Longer than I've been a writer, so over fifteen years. The majority of the time, the posts I write in this series are about both, and this one is no different except it leans more to the spoonie side than the writer side, but all of it can be applied to both. The reasons it applies more to the spoonie side is because of the topic, but trust me, it does also apply to anyone who, like me, is both a writer and a spoonie. So on with the post.

One thing you learn very quickly when you're a spoonie is that the community itself is very welcoming. They will go above and beyond and will do whatever they can to help you. I have been active in the community for a while, but it's really only been recent years - since I was published - that I started to get more involved. Along the way I've learned a few things, and one is that there will always be those outliers. People who are both spoonie and welcoming, but feeling like they need be the sickest in the room. Now the majority of you reading will probably think: Why? Who wants to be the sickest in the room? Who wants to win that competition? The simple answer for me is: I don't have the first clue as to why or who or what and the rest of it.

In my many years as both a spoonie and a writer, I have come across so many spoonies who are just awesome. They have supported me through tough times, been there through the good ones and celebrated with me at every achievement. I am still friends with so many of them and it warms my heart to think of all that we, as people, have achieved alongside being spoonies. The community is awesome as said above and I can not emphasise that enough. A friend of mine recently went through a cancer. She's okay and doing brilliantly, but when she needed advice on medical procedures that I hadn't gone through, it was one of my spoonie friends who, while being quite sick herself, stepped up to the plate to help me talk her through it all. This is a great example of how the community can and does work together.

Yet, of course, there are some bad apples, and it's those bad apples that I wanted to talk about today. You will always have people who don't believe you're as sick as you are, and some of those are, unfortunately, also spoonies. But those ones are easier to ignore than the ones who seem to take every update as a reason to "one-up" you in the sick Olympics. And that is exhausting. I've found it happens when I'm talking about the writing work I do. The level of my workload seems to be a sign for people to sit there and tell me how much sicker they are than me. I don't know why. I don't know what they hope to achieve by being crowned the sickest of them all. It's an ugly part of life and of the spoonie world and something that I don't think really gets talked about except in small circles.

So what does that mean for you? I mean if I'm telling you that it's not something that can be avoided completely, how do you as a spoonie and/or a writer, avoid falling into this trap? I have a few tips for you to avoid the pitfalls of the sick Olympics. As always your mileage may vary.

Everyone has limits and everyone in the spoonie community and/or chronically ill community (because not everyone ID's as a spoonie) should be aware of their own limits. It's not easy. When you get diagnosed, you're not exactly handed a pamphlet called Managing Your Expectations And You. Learning to pace yourself is a must, but so is remembering to be proud of what you manage to achieve. You and should be proud. However there will always be people who want to then use those achievements as a way to play the sick Olympics. You're able to achieve x therefore they are sicker than you. It's not just annoying to hear, but it feels like what they're doing is invalidating your struggle and the work you've put in. It's times like this when you want to quote Hamilton and ask: "Why do you assume you're the sickest in the room?" There's nothing to gain by being the winner of the gold in the sick Olympics, and all it does do is take time and energy away from what you're hoping to achieve. My advice is to acknowledge and be proud of what you've achieved. It's their problem and not yours.

A lot of places where the spoonie community is big, like Tumblr and groups on Facebook, always assume that everyone there will be sharing the same level of information about their conditions. You don't have to share anything you don't want to. What feels okay for me, might not feel okay for you, and that doesn't invalidate your status as a spoonie or as someone with chronic illness. You don't *have* to share anything. You will always come across people who will assume that because you don't share everything that you must be low down on the rung of the sickest person ever. Sometimes it's a battle worth fighting, but depending on how comfortable you are with sharing that stuff, sometimes it's not. Personally, I do share diagnosis in certain places. I don't hide it, but I also don't advertise. I've had people tell me that because I do happily call myself a disabled (and sick) author I'm therefore obligated to give everyone who asks my medical history. I get asks on Tumblr about oxygen usage, get asks about my wheelchair. I'm not ashamed of either one of them, but I am, just as you are, entitled to my privacy. No one is owed that.

It's something a lot of people say, that as you grow up, you care less about what other people think. I don't know who these people are, but I'm not one of them. I've tried various ways to just not care, but I feel like it's so engrained in me that it's just not easy to let go of those worries. Having said that, part of being sick is realising that it doesn't matter what people think of you. There will always be people who want to play the sick Olympics, or who think you're faking, or who think you could do more or less of this or that. And those people don't matter. They don't. Their opinions of you, your work, and your writing journey are not important. You don't need to act a certain way or do a certain thing for people to treat you and your work with the respect you deserve. Best advice is, don't engage with people who want you to justify how you can do writing, but not a "real" job. Or people who want to play that I'm the sickest ever card. That thinking is on them and not on you. You're doing awesome, keep going.

So there we have it, my three tips on how to avoid the sick Olympics. It's something you're gonna come across and it's something that sadly doesn't seem to be going anywhere. But, as I said, the majority of the spoonie and chronic illness community is welcoming, open arms and happy to be of any help to you. We all know what it's like to either be born sick, or to have become sick later in life. We all have different experiences and we all have different needs, but we should be working together to help each other. And in the whole, the community does. As already stated, your mileage may, of course, vary.

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