Writing with Disabilities

I always hesitate to use the word ‘disabilities’ when I refer to myself. My health problems are pretty major, but I have hope that, if I can get treatment, I will be able to get better and back to a, more or less, normal life. But at least on a temporary basis, I do deal with a mess of health problems, many of which aren’t outwardly visible, all of which impact my writing.

I have Hashimoto’s Thyroiditis, an autoimmune disease that targets the thyroid. Hypothyroidism (an underactive thyroid) is still often misunderstood by those who do not deal with it. The thyroid gland regulates every other system in the body. So when that doesn’t work, nothing does. Some people are lucky enough to get a dosage of thyroid replacement fairly quickly and feel good again. Some of us–especially those of us with other problems–do not, like me.

One of the biggest issues I fight is fatigue. Now, there’s being tired, there’s exhaustion, then there’s fatigue. Fatigue is the result of days of exhaustion piling onto one another. It’s a nasty symptom that does a whole lot besides making you want to sleep. It makes you feel lazy and crazy. You get brain fog and memory issues, among other things.

The hardest aspect of being an author with health problems–especially if you’re depending on your writing to help pay bills–is finding a balance between self-care and writing. That goes even for healthy authors. I know a few who will run themselves into the ground, burning the candle at both ends until they’re in bed sick.

This, of course, goes even further when you already have a compromised body. Learning that balance is extremely difficult. Accepting that there are further limitations is even more challenging. It can be done, but it can also rob you of feeling productive, making you compare yourself to others–dangerous on a good day–even more. “Well, if she can write six books a year, and she works a day job, I should be able to!”

That way lies utter madness.

Authors are unfortunately already prone to comparing ourselves to other authors: how much they write, how well they do, ratings, likes on Facebook, followers on Twitter, you name it. If we’re already having trouble, adding the comparisons on top of it is only going to make us want to give up.

Trying to balance not pushing myself beyond my limits and still be productive is almost a full-time job in itself. Because of the nature of my disease, I never know how I will feel or what I’ll be capable of from one day to the next. So planning is almost impossible. I could plan to do five things on a particular day, then wake up feeling like I haven’t slept at all and those five things become two.

The brain fog I mentioned earlier also makes things tough. If I get into writing and get interrupted, I end up spending a lot of time trying to get back to where I was. I can forget in a nanosecond what I was thinking and writing.

I developed a system, based on The Spoon Theory by Christine Miserandino to let my family know how I am doing at any particular time. Christine’s theory was born of educating a friend about her disease, lupus. While I don’t pretend to have anything like that, there are days where I can barely get out of bed. So, the system I built shows my family how I am feeling.

Yeah, “YES!” doesn’t happen very often…

I’ve also put together signs to let them know when I’m working, writing, or trying to recover spoons. For the most part, they respect it (perhaps it’s the threats of bodily harm…). This one’s my favorite:

Standard exception applies. I will take tribute in the form of coffee or food and you may survive. I make no guarantees though.

Occasionally, I’ll load up my Nerf gun and shoot anyone who opens the door and doesn’t have coffee in their hands. It’s surprisingly effective!

Go ahead. Make my dayyyy.

These are just some of the ways I’ve found to help me deal with my problems. Humor helps, keeping that sense of humor about my limitations makes it a lot less frustrating when I try to work within them.

That frustration is the hardest part of all of this, especially when I end up going a week, two weeks–or more–without being able to write. When I am too fatigued, I can’t even put a couple of coherent sentences together, much less make them good. However, that means on good days, when I spit out three thousand words, it’s that much sweeter.

Having a disability and writing can work. Like any other aspect of life with a disability, it takes compromise, creativity–we are authors, after all–and work, but it can be done. Keep a sense of humor, don’t hesitate to accept offers of help, be reasonable about how much work you can do, and you can still have a satisfying career.