Spoonie Writer: Managing Expectations

SPOONIE WRITER: MANAGING EXPECTATIONS

One of the first things I learned as both a spoonie and a writer was that I had to manage my expectations. Whether that was for other people, or for myself, or for the indie author world as a whole, it was a hard lesson to learn, but it was also a valuable one. Too much of the writing world is geared to those who are fit, well, and able to manage things that spoonies just can't. I know that I'm seen as someone who manages to do it all, while also being chronicallly ill and disabled, and I'm not going to tell you that if I can do x, y, z so can you because your life and limitations are yours. I don't know you and I'm not about to invalidate you because of that.

So why do I think it was a valuable lesson? Simply because while the writing world likes to work with those who are more abled and healthy, there is very much a space for the spoonies, the disabled, those who straddle the line between the two. We are valid and we are here, and we deserve to have time to grow and adapt, and become the writers and authors that we are very much capable of being. We just might need a little help, a little time, and a little understanding to get there.

If you've been coming to my blog for a while, you'll know this story. I was medically retired from the working world at nineteen, and then came back to something I'd loved in secondary school, and that was telling stories. I worked and reworked a project that I knew had so much potential, but it hadn't been told right by thirteen year old me. I kept at it, and even then I was getting hit with all these new ideas and went on to write more books, including the one that ended up being my début.

I was really struggling with the old condition, being my asthma, and the newer ones, being the M.E. and Fibromyalgia. I didn't have the slightest clue where the writing would take me, but I knew that I wanted to do this with my life. I wasn't ever going to be this overnight success but I was going to give everything I had to it. It would be another four years before my first book was finally released, and even then, many years more until I could release on a more consistent basis.

Too often, when I told people that I was published, it became about how I had done this despite my conditions, how I should be held up as some icon to all those other disabled and chronically ill people of what you could achieve. It left a bad taste in my mouth then, and it still does now. Even though I manage to get a lot done during my working life, it doesn't negate the fact that I am still chronically ill, I am still disabled, and I am still juggling that life with the writing one. I became an author by choice, I didn't want to become something people could hit other disabled spoonies over the head with.

So, when it comes to managing your expectations, I would simply say that, people in the outside world, those who don't know what it's like to live the spoonie life, will be expecting you to act a certain way, or to be less disabled or chronically ill, because you managed to do something that so few people do. Whether that's writing a book, editing, revising, querying and all of that, up to publishing a book, there will always be those who deem that as a sign that you're not one of those disabled, or you're not really that disabled. They don't see the battle, the struggle, the ups and downs of it all, and how hard it was for you. They just look at the end result and see it as something you should be proud of yes, but also invalidated as well.

It really comes to light when after doing this amazing thing, and you flare, or have a bad day, those same people come back and wonder why, because like, aren't you a published author? Doesn't that mean that you no longer have the disability or illness? Yes you pulled off something, in extreme circumstances that some people in those ordinary ones can't manage, but the illness, the disability, it's very much still there, and just remember that's okay. It's always okay, and you don't have to be inspiring at all times.

Any questions? Lemme know in the comments!

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