“Is this real? Or has this been happening inside my head?”
“Of course it’s happening inside your head, Harry, but why on earth should that mean that it is not real?”Harry Potter & Albus Dumbledore
Harry Potter and the Deathly Hallows by J.K. Rowling
Lately, I’ve been thinking about this exchange between Harry and Dumbledore in Harry Potter and the Deathly Hallows. In this chapter, Harry has chosen to die and meets Dumbledore at King’s Cross Station, where he learns more about his connection to Voldemort. Harry chooses to board a train and return and he wakes up in the forest, just after this exchange. I think that when J.K. Rowling wrote this dialogue, she was reaching out to her readers to acknowledge the impact that this story and these characters had on her and on her readers. When you have an invisible illness, you often hear, “it’s all in your head.” But like Dumbledore said, why on earth should that mean that it is not real?
What bothers me most about the saying, “it’s all in your head,” is that it’s intended to minimize symptoms and place blame on the individual for not getting better. Saying “it’s all in your head,” implies that the physical symptoms are not real. The pain you feel is not real, it’s a figment of your imagination. The debilitating fatigue isn’t real, it’s a lack of motivation. If it’s in your head, it’s under your control.
This is simply not true. Not only is it false, it’s very harmful and upsetting to someone struggling with chronic illness. Our symptoms and our illness are not under our control, despite our intense, constant efforts to manage our illness.
Harry pits the two options as being opposite. If something is going on inside your head, then it must not be real. If that were the case, would anything be real? Your consciousness cannot leave your physical being, so are you real or are you just in your head? It’s a stupid saying when you think of it literally.
Looking at it literally, isn’t everything we experience happening inside our head? Our brain processes every external stimulus we face. That’s how we experience the world around us. Our brain processes pain, language, sound, smells, emotion, the passage of time, the list could go on and on and on. Even things that can’t be mentally controlled, like heart rate, blood pressure, and digestion, are technically controlled “in your head.”
The autonomic nervous system consists of the brain, spinal cord and nerves and is controlled by areas deep in the brain stem. This part of our brain is not under our control. This is why someone with a terrible head injury can be alive and breathing in a vegetative state. The brain stem is constantly shifting between the sympathetic “fight-or-flight” state and the parasympathetic “rest-and-digest” state. In the colloquial sense, physical responses like an increased heart rate or dilated pupils would not be considered to be “in your head,” but the reality is, they are initiated in the brain stem and are out of your mental control.
The disconnect comes from the belief that things are under our control if they’re in our head and they’re out of our control if they’re in our body. The saying “it’s all in your head,” is an idiom. The meaning of the saying is not discernible from the individual words. Yes, it’s in your head, but that’s not what they’re saying. They’re saying that it’s not real. That you can’t possibly be feeling those symptoms. That you’re making things up.
The saying also refuses to define what “it” is. My fibromyalgia pain is all in my head. My exhaustion and debilitating fatigue from ME/CFS is all in my head. My dizziness and elevated heart rate from POTS is all in my head. My illness is weakness and it is all in my head.
By defining what IS in your head, it sounds much harsher, right? Yet, we allow friends, family, doctors, to diminish our experience by saying “it’s all in your head,” without asking them exactly what they mean or what “it” is that is in our head.
I always think of a better response or comeback long after a conversation has ended. I ruminate on interactions and wish I had handled them better. Here’s a list of things I want to say next time someone tells me “it’s all in your head.”
- What do you mean?
- Nice and simple. Make them say what they really mean instead of using this idiom.
- What is in my head?
- Make them define which symptoms or aspects of your illness are not legitimate to them.
- Why is it in my head and not anywhere else?
- Make them explain why they don’t believe you.
- What is the alternative to being in my head and why do you think it’s not there?
- Make them see that the saying is stupid.
- Of course it’s in my head, but why would that make it not real?
- Dumbledore’s wisdom and his response to Harry shows that being “in your head” is not the opposite of being real.
At the root of it all, I just want to be believed. My chronic illness is real and my symptoms are real, even if you can’t see them. I want to feel better and I am doing everything I can to feel better, but it’s not simply about my choices and actions.
ME/CFS isn’t just being tired. I’m not lazy, bedbound and sleeping 12 hours without feeling rested because I want to. I am taking supplements, resting, stretching, and pacing myself to improve my symptoms.
Fibromyalgia isn’t just a low pain tolerance. I’m not inventing pain in my legs or my back. I am stretching, meditating, doing tai chi, doing acupuncture and taking medicine to alleviate my symptoms, but they’re still there.
POTS has measurable physical effects like changes in blood pressure and heart rate and is still treated like it’s “all in your head.” I take medicine, monitor my heart rate and blood pressure throughout the day, wear compression socks, avoid heat and recline or lay down whenever possible.
I didn’t choose to become ill and I can’t simply choose to become well. If illness and wellness were simply a choice, like you imply when you say it’s all in your head, we wouldn’t be ill at all. Like Dumbledore says, even if my pain or my fatigue can’t be measured and is considered to be in my head, that doesn’t make it any less real.