How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
My constant companion in middle and high school was a bottle of pills. I took over-the-counter anti-inflammatories every day to try and counter searing pain.
I remember coming home from class or swim practice and just crashing in bed for the rest of the day. I remember my periods, how for a week a month I could barely get out of bed or stand up straight. I’d go to doctors and tell them how every part of my body hurt, how I had a headache that never went away.
They never listened. They said I was depressed, that I had anxiety, that I was just a high-achieving girl with bad periods. They said my pain was normal and there was nothing wrong with me.
I was never once given advice or techniques for managing pain. So, I pushed through. I ignored my pain. I kept popping anti-inflammatories like candy. Inevitably, I experienced stronger, longer flares. I ignored those, too.
We need to start taking the pain of teenage girls seriously. Meanwhile, too many doctors, not to mention parents, counselors, and other people who should know better, are telling us to ignore it.
Last week, NPR reported on Dr. David Sherry, a pediatric rheumatologist at Children’s Hospital of Philadelphia. Sherry treats teenage girls for whom the medical establishment can’t find physical reasons for intense chronic pain. Without a reason for the pain, they figure, it must be psychosomatic. These girls must be “thinking” themselves into pain. And the only way to fix that, according to Sherry, is to put them in even more pain, to have them exercise past the point of exhaustion, egged on by a drill instructor.
To overcome their pain, these girls are taught, they must shut it out. They must learn to ignore the alarms sent out by their nervous system. There’s a mention in the story of a young girl who had an asthma attack during treatment and was denied her inhaler. She was forced to continue exercising, which is horrifying. Eventually, some girls report lessened pain. NPR covers this as a breakthrough.
It’s not a breakthrough. Both other patients and parents have publicly spoken against Sherry, calling his treatment torture and alleging that he kicks out anyone who doesn’t work in the way he wants. There are no double-blind studies or large peer-reviewed studies that show this “therapy” works. There’s no way to tell if these girls leave the program with less pain, or if they just learn to lie to cover it up.
There’s a long history of ignoring women’s pain
Charlotte Perkins Gilman, Virginia Woolf, and Joan Didion have all written about living with chronic pain and their experiences with doctors. From ancient Greece, where the concept of the “wandering womb” began, to modern times, where
Rather than prescribing the rest cure, we instead send young women to pain clinics like Sherry’s. The end result is the same. We teach them their pain is all in their heads. It’s teaching them not to trust their bodies, not to trust themselves. They’re being taught to grin and bear it. They learn to ignore the valuable signals their nervous systems are sending them.
I would’ve been a candidate for Sherry’s clinic as a teenager. And I’m so very grateful I didn’t come across someone like him while I was searching for my diagnoses. My medical records are riddled with “psychosomatic,” “conversion disorder,” and other new words for hysterical.
I spent my early 20s working very physical restaurant jobs, including as a pastry chef, ignoring the pain, stuffing it down. After all, my doctors said there was nothing wrong with me. I injured a shoulder at work — ripped it right out of the socket — and kept working. I had excruciating headaches due to undiagnosed cerebrospinal fluid leaks and kept working.
It wasn’t until I was fainting in the kitchen that I quit cooking. It wasn’t until I was completely bedridden after a pregnancy — when I discovered I had Ehlers-Danlos syndrome and later mast cell activation disorder, both of which can cause excruciating full-body pain — that I began to believe my pain was real.
As a society, we’re terrified of pain
I was. I spent my youth yanking up my proverbial bootstraps, tearing my body to shreds, controlled by ableism I had internalized that told me only people who could work were worthwhile. I’d spend my time in bed berating myself for not being strong enough to get up and go to work or school. The Nike slogan “Just Do It” would float through my mind. My entire sense of self-worth was wrapped up in my ability to work for a living.
I was fortunate to find a pain therapist who understands chronic pain. He taught me the science of pain. It turns out chronic pain is its own disease. Once a person has been in pain for long enough,
I learned how to rest. I learned mind-body techniques, such as meditation and self-hypnosis, that acknowledge my pain and allow it to calm. I learned to trust myself again. I realized that when I was trying to stop my pain or ignore it, it only became more intense.
Now, when I have a pain flare, I have a comfort routine. I take my pain medication and distract myself with Netflix. I rest and ride it out. My flares are shorter when I don’t fight them.
I will always be in pain. But pain is no longer scary. It’s not my enemy. It’s my companion, a permanent houseguest. Sometimes it’s an unwelcome one, but it serves its purpose, which is to warn me.
Once I stopped ignoring it, instead turning toward it, it became content to whisper rather than constantly scream. I fear the girls who are told their pain isn’t believed or should be scared of it will forever hear that screaming.
Allison Wallis is a personal essayist with bylines in The Washington Post, Hawai’i Reporter, and other sites.