I’m reading Moving Mountains: Writing Nature Through Illness and Disability. In it, people with a variety of illnesses: rheumatoid arthritis, ME/CFS, migraine, and more, talk about their experiences outdoors, whether that’s volunteering with their local conservation group to install bat boxes or wild swimming. One thing that has struck me as I read these pieces is that everyone is trying hard to show that they really are disabled. It’s as though they have to prove that they’re ill, that they have to exaggerate the contours of their illness to justify their limitations.
I’m guilty of the same thing. I’m sure readers are tired of hearing me talk about energy “spoons” and having to sleep extra and feeling mentally under the weather or having a bipolar high. But when we have a largely invisible illness, it feels like we have to make it real for people in case they don’t believe us. We have to be clear about what we can and can’t do so that readers understand.
But how much is too much? I know that regular readers of my blog are well-versed in the vagaries of my illness. Those who are reading my book right now (eeeek!) know that I struggle with mental illness. It’s not a secret. The secret is what it means to be mentally ill.
There are more nuances to mental illness than there are with straightforward things like heart attacks or broken limbs. So, what it means to be mentally ill is different for everyone. Some people with BP II function fine in real life. I don’t – apparently BP II and anxiety disorder is the hardest combination to manage. See, there I go again: justifying my invisible illness, because I know it’s not the same as if I just had a broken leg in a cast and would be better in 12 weeks.
I was on a podcast last week, Talk Nerdy with Cara Santa Maria, and I felt like she was talking about my mental illness too much. When she asked if I had anything to add, I said that having a mental illness and being on long term disability isn’t about hanging around and watching TV and doing whatever you want. It’s meant to help you manage life with your mental illness, because you’re usually incapacitated to some extent. For example, it took me five years to write my book. If I hadn’t been ill but was on disability anyway, I probably would have finished it in two years. Instead, I could only write for an hour or two a day because of the BP II and anxiety. The same illnesses that have me on LTD.
I shouldn’t have to justify my illness, just like the authors in the Moving Mountains book shouldn’t have to justify their illnesses. These illnesses just are, and we learn to live with them. The problem is that we run up against the capitalist model of productivity. If you’re not productive, you need to have an excuse for it. And our excuse is that we’re ill, but we have to justify it because people will assume we’re just lazy.
Thus, in many cases, people misinterpret invisible illnesses. They see them as a form of attention-seeking. “Oh I’m so sick, I can’t work. Boo-hoo poor you.” We have to perform our illnesses: people expect us to be sad all the time, not enjoying life and staying in bed all day. We must be chained to a life in which we can’t do anything and nothing is fun. We can’t laugh, because our illness makes things so negative.
I can tell you it’s not like that. Yes, I have days where I barely make it out of bed and feel sad about watching life go by. I also have low episodes where I’m not just sad, but suicidal. Yes, I have a hard time getting excited about things because my dopamine receptors are all clogged up from taking Olanzapine. But I still have active serotonin receptors and natural endorphins that are released when I do something active, both of which can help me feel things and laugh about them. Granted, when I’m “stable” I’m in a constant state of depression, on average a moderate low, as the psychiatrist is worried about me getting too high again. He warns me to catch highs early, because of the cognitive decline and massive low that occurs after each one. I love the feeling of the high so much, though, that I have a hard time knocking it down. As the psychiatrist says, once you’ve had a high, nothing else feels as good.
Anyway. What I’m trying to say is that I’m ill. The authors in Moving Mountains are ill. People like climber Keiran Cunningham (bipolar), mountaineer Cory Richards (bipolar), and nature writer Polly Atkin (Ehlers-Danlos and Genetic Haemochromatosis) are ill. Each of us deals with our illness in our own way, depending on our personal capacities, support, and abilities. We may not look ill, but we are. And we shouldn’t have to prove it to the world.
