Health

Get Your Flu Shot. You Could Save the Life of a Disabled Person.

Friday, September 28, 2018“Oh, I never get the flu shot. It makes me sick,” a woman tells me at a dinner party, with the sort of shattering confidence that only ignorance can provide. I am, for a moment, taken aback — and living…

No, I’m Not the Patient: Caring for an Aging Parent When You’re Disabled and Everyone Thinks You’re the One Dying

Wednesday, September 19, 2018Caring for an aging (or ill) parent or loved one is always complicated. That subtle shift that takes place over time— where the parent becomes the one being cared for, instead of the other way around. It’s a journey as…

Doctors Need to Believe People Who Are Disabled and Undiagnosed

Friday, August 31, 2018When you’re disabled, people expect your story to follow a predictable trajectory: you experience a symptom (or a litany of symptoms), you see doctors and specialists, tests are run, and at some point, you receive a diagnosis. Though it might…

We Need to Think About the Future Beyond “Miracle Drugs”

Wednesday, August 29, 2018On December 23, 2016, the FDA approved a drug treatment for Spinal Muscular Atrophy (SMA). Two days before Christmas. I wished the timing was different, a month earlier or later would have been better. So close to Christmas, the approval…

Stop Telling Chronic Pain Patients That We Should Just Accept Our Pain

Thursday, June 21, 2018The “pain acceptance” movement has begun to gain traction in the wake of deaths from the opioid epidemic—at its most basic, pain acceptance counsels that people in chronic pain should accept that they will always be in some level of…

It’s Time to Stop Ignoring the Intersections of Marginalized Identities

Friday, May 25, 2018Intersectionality, according Kimberlé Crenshaw who coined the term, “is a lens through which you can see where power comes and collides, where it interlocks and intersects.” It has also been defined as “a framework designed to explore

May is Ehlers-Danlos Syndrome Awareness Month. Here’s What You Should Know.

Wednesday, May 23, 2018When I tell people I have Ehlers-Danlos syndrome (EDS), they usually give me a blank stare or reply, “What does that mean?” Answering doesn’t clear up any of their questions, and it actually creates more: How did I get EDS?…

First Doctors Told Me My Pain Was All In My Head, Then They Told Me I Would Die

Tuesday, April 24, 2018My disability requires me to carry memory foam pillows with me everywhere I go.  My disability is invisible — the pillows are not. At a recent cardiology appointment, a nurse made fun of my memory foam pillows, assuming I was…

Why Won’t Doctors Believe Women in Pain?

Tuesday, March 13, 2018I’ve never been drunk, never once succumbed to peer pressure to smoke, do drugs or get high.  I’m not a partier — never have been, never will be.  Up until three and a half years ago, the strongest substance I…

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