‘Madness’, Medical Misogyny and Misdiagnoses: The Woes of the Chronically Ill Woman

By Simone Brown

During my childhood, I can remember doctors dismissing my mother every time she brought up something about my health that was worrying her. It’s just growing pains. Kids hurt themselves all the time. She needs to get out more. It’s a bad cold. One doctor even suggested my hand’s recent malfunctions were because of my parents’ divorce (when I was six)!

When I got old enough to go to my appointments on my own, my mother resisted it. She was never the kind of mother to stop me from exploring my independence, so her diligence about the doctor’s office seemed weirdly out of character. ‘You know what you’re going to say, right? Don’t leave until they listen to you. Repeat exactly what you told me. Don’t take no for an answer. Trust what you are feeling and trust your body.’ I thought she was a hypochondriac, and so did my family doctor.

They were relieved to deal with me instead of her. I would smile and nod along with whatever they said without ever asking questions. I didn’t understand what my mother had been trying to teach me. I let a lot of professionals tell me I was perfectly healthy even though I was struggling because I trusted them to know my body best. I got used to thinking, ‘that’s weird’, and going about my day in situations where most people would rush to a walk-in clinic.

It only got worse as I got older. In the eyes of my doctors, I went from an accident-prone kid to a mentally-ill teenager. Every illness, pain and problem could be chalked up to the burden of puberty and a turbulent social life. When I complained about fatigue and a lack of sleep, I got lectured on bad sleep hygiene, but no one ever asked why a sixteen-year-old could sleep from 10 pm to 3 pm without stirring. Each month I wondered if I would mistake my appendix bursting for cramps because I was told periods hurt for everyone. My therapist suggested I try meditating and deep breathing, but I still ended every day feeling like I had been hit by a truck.

Frustration bubbled in me from sixteen to nineteen years old. The doctors I saw didn’t see anything wrong with me. Every test came back normal. Eventually, they stopped listening to my symptoms altogether. I got a strong muscle relaxer to target my headaches and reboot my sleep schedule, and every new pain was solved by being told to up my dosage and drink more water.

After I aged out of my paediatric office, I resorted to going to walk-ins and demanding someone pay attention to me, damn it. After years of overworking my liver without any improvement, I weaned myself off my medication and started journaling the ebbs and flows of my body. For nearly two years, I’ve been bouncing from doctor to doctor. All the while, my body is breaking down even more.

The fight is exhausting, but what makes it worse is that no one believes me. It’s the thing my mother wanted to hide from me, though she couldn’t make the world change overnight. I am graced with diagnoses like ‘hysterical,’ ‘stressed,’ ‘mentally ill,’ and ‘sensitive,’ never to be heard and never to be believed.

The fastest way to get more tests was to take up space in these offices that didn’t want me, plant my feet, and refuse to leave until someone gave me the courtesy of a reference. Like my mother had hoped, I learned to stand up for myself. But neither of us expected how little it would end up mattering. I was denied my medical records, had my appointments cancelled, placed on endless holds, hung up on and abandoned by the places meant to give me answers.

Through it all, my mother held my hand and rubbed my back. She told me I was strong, that this moment would pass; things would hurt less tomorrow. She drove me to doctor’s appointments and hugged me while I broke down in parking lots out of frustration. When I begged her to let me give up, she reminded me how much more fight I had in me. She gave me her spirit and her stubbornness – I used them every day.

Sometimes we reminisce about all the places we have been and the things we have tried in order to fix my broken body. We can laugh at the ridiculously sexist things I have been told and the nonsensical diagnoses doctors have given me to usher me out the door faster. Secretly though, I know it hurts her to see how much I’m hurting. She calls me a piece of herself that she happily gave away; she feels all my pain as if it were her own.

We both blame ourselves for the doctors of my youth and the failures of our medical system. Had she dragged along my father, taken up more space, demanded more things, cried, screamed, and sat on the floor of my doctor’s office, maybe I wouldn’t be the one doing these things today. Unfortunately, it wouldn’t have mattered either way.

We are women, I am chronically ill, and no amount of advocacy or motherly protection could have saved me.