This post is part of an on-going series exploring the ways in which marginalized identities and oppression play a role in medical care, particularly for disabled people.
Yesterday, I had the joy of spending the afternoon in the ER because urgent care wasn’t comfortable diagnosing/treating because of my other conditions complicating a relatively simple matter. While going through triage, I had an unusual encounter.
“What’s your pain level?” the nurse asked me.
“About a seven, and I’m on pain killers,” was my response
“Wow. You must be trooper. You seem fine.”
“Yeah, I’m in pain all the time. I have to just fight through it or I wouldn’t be able to go about my life.”
“Oh, that makes sense. You must be very strong.”
This may not seem like that strange of a conversation. What was strange, almost unsettling, yet also almost overwhelming joyful, is that she listened to me. She believed that I was actually in pain even though I didn’t look like it to her. She was understanding that I have a chronic condition that has altered how I express pain. This is strange because this almost never happens.
Usually, doctors are very dismissive of my pain. I am blown off. I am told it must not be that bad. I am ignored. I am denied treatment. Most of all, I am disbelieved. All of this due to medical ableism and sexism.
As a woman, doctors are more likely to downplay or ignore my pain. This has come to light in a number of recent studies. One study showed that women in the emergency department experiencing the same severity of abdominal pain as men waited an average of 65 minutes before being treated while men only waited 49 minutes on average. Women also tended to be given less pain medication even when other factors were accounted for.
Gender bias in the medical field has wide reaching effects, from the treatment women receive to the rate at which women die of the same conditions as men. For instance, the signs of a heart attack with which most of us are familiar apply specifically to cis-men. People of other genders often have different signs and symptoms. This combined with the lack of seriousness given to women’s pain has led to a world where young cis-women who have attacks are twice more likely to die as a result than young cis-men.
Further, the majority of medical and pharmaceutical research is performed using cis-men (usually white cis-men) as the subjects. This leads to research that is specific to one group being cross applied as universal research, despite evidence that many illnesses present differently between cis-men and cis-women as well as the differences in how drugs interact with a patient’s system due to different hormone levels and physiological differences. Diseases that occur more often in women or treatments specific to women are also largely under-funded which has led to a dearth of knowledge regarding many illnesses that mainly affect women.
I have endometriosis, a disease that can only be diagnosed by surgery, a disease that despite knowing of its existence since the 1950’s we still know unacceptably little about causes or effective treatment, a disease that goes undiagnosed far too often because women’s pain is often dismissed as “just bad cramps” or “something everyone goes through.” By now, we should know about the causes of endometriosis. We should have effective treatment. Hell, we should at least have effective pain management. Yet, there is little research into the causes or treatments of endometriosis. People with this chronic, potentially debilitating illness often go from doctor to doctor receiving no answers as to why they are in so much pain. The medical field continues to let down the many of us who suffer from this illness, much of which can be traced back to sexism within the medical industry.
Aside from sexism in the medical industry, there is a great deal of ableism at play. First, let’s consider the pain scale. When you walk into a doctor’s office or hospital, there is often a chart listing from one to ten with different faces next to the numbers. For able-bodied neurotypicals, this probably seems reasonable as most people expect certain changes in demeanor to correlate with pain levels. However, this scale in itself is ableist. Many neurodivergent people show pain differently than neurotypicals. Flat affect is a symptom of many neurodivergencies (notably autism and schizo spectrum disorders). Our faces may not change to reflect what we are experiencing. However, just because our face doesn’t match what we are feeling doesn’t lessen or invalidate our pain. Yet, these strong cultural notions of what someone in pain should like leaves those of who don’t express pain typically having to continually defend ourselves against medical professionals who assume they can gauge our pain by our faces. Further, many neurodivergent people have difficulty reading neurotypical facial expressions and may struggle to understand the pain scale because of this.
For those with chronic pain conditions, the scale is equally useless and ableist. When you are in pain from the moment you awake to the moment you go to bed, your expression of pain changes. If my demeanor accurately depicted the levels of pain I was in all the time, it would freak people out. You learn to cope and paint on a smile, even when it feels like your being stabbed, even when you’re in enough pain most people would have rushed to the ER already. I can talk through pain. I can work through pain. I can even laugh and joke around while in pain, because if I hadn’t learned to do these things, I would be a miserable mess all the time. Yet these coping skills that have helped make my life more livable cause doctors to doubt my pain.
People are different. This seems to be something they forget to teach in medical school. People are different and people react differently to pain. Some people are hypersensitive to pain and a paper cut can be excruciating. Other are hyposensitive and my barely notice a broken bone. Neither person’s pain is more valid than another. Pain is subjective. There is no objective way to measure pain. Each person will have their own pain scale based off of personal experience and tolerance. We, as a society, and medical professionals in particular, need to start trusting people to know their own bodies. We need to trust people’s evaluations of their own pain.
I was very lucky to deal with a medical professional who believed me when I told her I was in a great deal of pain, even if my demeanor didn’t match what would be expected of someone in that much pain. What’s unfortunate is that this truly was a moment to celebrate because it is such a rarity.
Our medical system is steeped in oppression and bias. Here I have touched on some of the ways sexism and ableism can play a role in medical care (though there are certainly far more effects that what I was able to cover). Aside from these, race, gender-identity, income level, sexual orientation and much more affect the medical care a person receives.
In our fight against oppression, we must remember that universal healthcare will not fix many of the inherent issues in the medical field. If we want all people to truly be free and have access to the tools need to live a healthy life, we must fight against the stigmas and biases of the medical industry and in ourselves.