Why Messages About Positive Thinking Can Be Harmful for Those With Chronic Illness

I have been living with an autoimmune disease for nearly five years now. Cancel that. I have been living with an autoimmune disease for most of my life. I have known about it for nearly five years.

Having a diagnosis is not what I expected it would be. I think I imagined it would lead down a direct path toward wellness. I anticipated an adjustment period in which I would master the management  of my illness before skipping back into the life I had always dreamed for myself, if only my health weren’t holding me back.

Turns out autoimmune disease has its own agenda and mastering one looks a lot like being very still so as not to drown in quicksand. It feels like I’m simultaneously doing nothing and everything in my power not to drown. And as I’m holding still I’m watching, and I’m seeing the world in a way I had never seen it before when I was a moving part of it. One of the things I see is a whole lot of chronic illness warriors getting bullied with messages about positive thinking.

If you feel like the idea of living your best life is ruining your life, you’re not alone. What I hear underpinning this notion is that the life I have is not enough. This doesn’t feel positive. It feels like victim blaming, and frankly I don’t need that because I’m still learning not to blame myself.

Part of me still believes this is my fault. I understand that there is not a single action or series of actions I committed that caused me to develop celiac disease, bipolar disorder, SIBO or PCOS (and whatever remains undetermined). I get that I’m not to blame for my illnesses, but I still feel like I’m to blame for not overcoming them. I feel like I have failed to conquer by admitting that every aspect of my life from my activities, to the people in it, to the clothing I wear, has been curated by chronic illness, rather than lived in defiance of it.

Sadly, I don’t think we have a proper context for understanding illness outside of recovery, and more unpleasantly, death.

Wasn’t I supposed to rise l like a phoenix from the ashes and achieve all my dreams from the seat of the toilet where I’m forever perched? From that same seat was I not supposed to shepherd all my ill-brethren to uncharted inspirational territory where they, too, achieved their own dreams? Wasn’t I at least supposed to become a life coach?

There is nothing inspirational about the absurd amount of time I have spent on the toilet. It’s not where I have epiphanies. It’s where I re-read the instructions on shampoo bottles and sniff my husband’s styling putty and deodorant to keep myself entertained. On a particularly exceptional day, I might come out of the bathroom with an idea for a story.

In the event that I actually remember to use it, I might send out an article that will hopefully get a few likes or comments, and this is where I begin my downward spiral. Suddenly I think maybe my situation has nothing to do with autoimmune disease or mental illness. Maybe it’s me. Maybe I’m the only thing that’s holding me back. Maybe I’m using this as an excuse. Maybe I’m not trying hard enough.

So instead of listening to my body, I push it, and it feels good for a minute, or however long it lasts before I crash.

Let me tell you a secret I learned while I was on the toilet: I’m not leading my best life. I’m leading my only life. It includes doctors and tests, B-12 shots and naps and, episodically, frequent trips to the bathroom. It also includes people I love, pets I adore, and time spent practicing my craft and teaching it to others. It’s neither inspirational or unfortunate.

The only time I feel unhappy with my life is when I think it should be more: more active, more balanced, more goal-oriented, more inspirational. When I hear noise about illness being overcome by positive attitude I want to shout, “Stop peddling your wares! Stop assuming that illness is a bad attitude or the manifestation of negative thoughts.” Chronic illness warriors are masters of positive thinking. Many times it’s the only thing that keeps us inching forward.

Acceptance is positive, and it’s hard, and I’m up for that. Be more tells me you think I’m not enough, and that’s not cool. Instead of challenging sick people to think more positively we need to challenge the well and able-bodied to be more accepting.