Smile. You've earned it.
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People who live in pain spend a lot of time smiling. But those smiles are different – they’re directed at others, they’re forced, and they’re intended to make other people feel more comfortable.
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A few bad apples: Don't let a rotten provider stress you out (& find a better one!)
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Sometimes, I leave a doctor’s appointment and think “gawd, that was an awful experience.” And for most patients, bad experiences equal bad doctors. The doctor may be brilliant, published, and well-respected, but if she’s rude, condescending, or freaks me out, she gets a failing grade from me.
Read MoreI dropped an f-bomb at the gynecologist yesterday. Here's why.
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I think we as patients would often be better off with no medical intervention. Because not all "intervention" counts as healthcare. And yesterday, while I saw a doctor and received an exam and had some tests run, I wasn't cared for. And it felt like shit.
Read MoreA history of pain does NOT mean that any activity is off-limits for you.
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Exercise feels good, it’s empowering, and it’s taught me to be in-tune with my strengths in a way I didn’t realize possible. I’ve formed friendships, gained confidence, and found community. And, had I listened to those providers who long ago told me I should live more gently, I would’ve missed out on the entire experience.
Read MoreWhy providers should hear my patient story
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If you’re a provider who treats those who hurt, I urge you to stay above the chaos of pain’s wrecking ball. You need to remain logical, focused on the end-goal and the pain science and the sensitivity of the patient’s nervous system. You need to be willing to refer patients to other providers. Be careful not to attempt treatments that are likely to worsen the patient’s suffering, simply because you’ve exhausted all other treatment modalities.
Read MoreLet's talk about sex. (+ vaginal pain + patient-provider communication)
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For years, my pelvic pain prevented me from having the fun, spontaneous, gloriously cliché 20-something sex that my friends were enjoying. You know – the kind of sex that they gushed about at brunch. Sex that was breaking their hearts and exhilarating their sense of liberated womanhood and adulthood. Sex that their doctors were lecturing them about. I couldn’t have that kind of sex because my vagina (and vulva and back and thighs) were excruciatingly painful. That was my dirty little secret.
Read MoreEncounters with the Disability Police: my illness, emotional support animal, and "be nice" mandate
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Others’ judgment and treatment of me transformed my own beliefs about the legitimacy of my illness. I unintentionally invalidated my own body’s experience of pain, and I’d allowed those who chastised me for “taking advantage” to usurp my right to be treated decently outside the confines of my own home. In letting people like this dictate how I would care for myself while enduring unspeakable pain, I somehow lost ownership of my experience.
Read More“But you don’t look sick.”
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I opened the driver door and was confronted with a wave of judgment and anger. The man yelled at me: “can’t you see we are still getting into our car? You’re not even disabled! You shouldn’t even be parking there!” I flushed with embarrassment and became shaky. And for the first time in my life, I yelled at someone in public. “You have no idea what you’re talking about. You know nothing about me!”
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