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.
As someone with a chronic illness, I shouldn’t have to advocate for myself when I’m at my most ill. Is it too much to expect doctors to believe the words that I have to force out, amidst spikes of pain, after I’ve dragged myself to the emergency room? Yet so often I’ve found that doctors only look at my patient history and actively ignore most of what I've said.
I have fibromyalgia, a condition that causes chronic pain and fatigue, along with a laundry list of associated conditions. Once, I went to a rheumatologist — a specialist in autoimmune and systemic musculoskeletal diseases — to try to better manage my condition.
He suggested I try water exercises, as low-impact exercise has been shown to improve fibromyalgia symptoms. I tried to explain the many reasons why I can’t go to the pool: It’s too expensive, it takes too much energy just getting in and out of a bathing suit, I react badly to the chlorine.
He brushed each objection aside and didn't listen when I tried to describe access barriers to water exercise. My lived experience in my body was seen as less valuable than his medical degree. I left the office crying in frustration. Moreover, he didn’t actually offer any useful advice to improve my situation.
Sometimes when doctors don’t listen, it can be life-threatening
I have treatment-resistant bipolar disorder. I don’t tolerate selective serotonin reuptake inhibitors (SSRIs), the first-line treatment for depression. As with many with bipolar disorder, SSRIs make me manic and increase suicidal thoughts. Yet doctors have repeatedly ignored my warnings and prescribed them anyway, because maybe I just haven’t found the “right” SSRI yet.
If I refuse, they label me noncompliant.
So, I end up either in conflict with my provider or taking a medication that inevitably worsens my condition. On top of that, the increase in suicidal thoughts has often landed me in the hospital. Sometimes, I also have to convince the doctors in the hospital that no, I can’t take any SSRIs. It’s landed me in a weird space sometimes — fighting for my rights when I also don’t necessarily care whether or not I live.
“No matter the amount of work I do on my intrinsic value and my being the expert on what I feel, being unheard, ignored, and doubted by a professional who society holds as the ultimate arbiter of health knowledge has a way of destabilizing my self-worth and trust in my own experience.”
— Liz Droge-Young
These days, I prefer to be labelled noncompliant rather than risk my life taking a medication I know is bad for me. Yet it’s not easy to just convince doctors that I know what I’m talking about. It’s assumed that I’ve been using Google too much, or that I’m “malingering” and making up my symptoms.
How can I convince doctors that I’m an informed patient who knows what’s happening with my body, and just want a partner in treatment rather than a dictator?
“I have had innumerable experiences of doctors not listening to me. When I think about being a black woman of Jewish ancestry, the most prevalent problem I have is doctors discounting the probability of me having a disease that is statistically less common in African Americans.”
For years, I thought the problem was me. I thought if I could just find the right combination of words, then doctors would understand and provide me with the treatment I needed. However, in swapping stories with other chronically ill people, I’ve realized that there’s also a systemic problem in medicine: Doctors often don’t listen to their patients.
Worse yet, sometimes they just don’t believe our lived experiences.
Briar Thorn, a disabled activist, describes how their experiences with doctors affected their ability to get medical care. “I was terrified of going to doctors after spending 15 years getting blamed for my symptoms by being fat or being told I was imagining it. I only went to the ER for emergency situations and didn’t see any other doctors again until I became too sick to function a few months before I turned 26. This turned out to be myalgic encephalomyelitis.”
When doctors routinely doubt your lived experiences, it can affect how you view yourself. Liz Droge-Young, a disabled writer, explains, “No matter the amount of work I do on my intrinsic value and my being the expert on what I feel, being unheard, ignored, and doubted by a professional who society holds as the ultimate arbiter of health knowledge has a way of destabilizing my self-worth and trust in my own experience.”
Melanie, a disabled activist and creator of the chronic illness music festival #Chrillfest, speaks about the practical implications of bias in medicine. “I have had innumerable experiences of doctors not listening to me. When I think about being a black woman of Jewish ancestry, the most prevalent problem I have is doctors discounting the probability of me having a disease that is statistically less common in African Americans.”
The systemic issues Melanie experiences have also been described by other marginalized people. People of size and women have spoken about their difficulty receiving medical care. There’s current legislation proposed to allow doctors to refuse to treat transgender patients.
Researchers have also taken note of bias in medicine
Recent studies have shown that versus white patients with the same condition. Studies have shown doctors often hold outdated and racist beliefs about black patients. This can lead to life-threatening experiences when doctors are more likely to believe a racist construct than their black patients.
Serena Williams’ recent harrowing experience with childbirth further demonstrates the all too common bias black women face in medical situations: misogynoir, or the combined effects of racism and sexism towards black women. She had to ask repeatedly for an ultrasound after childbirth. At first, doctors brushed off Williams’ concerns but eventually an ultrasound showed life-threatening blood clots. If Williams hadn’t been able to convince doctors to listen to her, she may have died.
While it’s taken me over a decade to finally develop a compassionate care team, there are still specialties in which I don’t have a doctor who I can turn to.
Still, I’m lucky in that I’ve finally found doctors who want to be partners in care. The doctors on my team aren’t threatened when I express my needs and opinions. They recognize that while they’re the experts in medicine, I’m the expert on my own body.
For example, I recently brought up research about an off-label non-opioid pain medication to my GP. Unlike other doctors who refuse to listen to patient suggestions, my GP considered my idea rather than feeling attacked. She read the research and agreed it was a promising course of treatment. The medication has substantially improved my quality of life.
This should be the baseline of all medical care, yet it’s so incredibly rare.
There’s something rotten in the state of medicine, and the solution is right in front of us: Doctors need to listen to patients more — and believe us. Let us be active contributors to our medical care, and we'll all have a better outcome.
Liz Moore is a chronically ill and neurodivergent disability rights activist and writer. They live on their couch on stolen Piscataway-Conoy land in the D.C. metro area. You can find them on Twitter, or read more of their work at liminalnest.wordpress.com.