Accessing quality medical care is, understandably, crucial for spoonies’ wellbeing. For patients living with any serious illness, there are many barriers that can inhibit access to care — geography, cost, insurance, time, symptoms, transportation, knowledge of your particular conditions… One prominent type of barrier is bias in medicine. Here are our 5 tips for how you can self-advocate when you feel the effects of bias!
1. Remember that all people have biases.
This doesn’t necessarily make us bad people, and that doctors are often burnt out and compassion-fatigued. It never feels good to encounter bias, but it can help to remember that doctors are just people.
2. Carry the research with you.
If you anticipate skepticism, bring a printout of research to back you up in case they need reassurance.
3. Bring another advocate.
Medical PTSD and brain fog can make it tough to be your most assertive, confident self. Having someone there who knows the drill, believes you, and isn’t afraid to speak up, can be a game-changer.
4. Phone a friend.
Do you have someone who always helps you feel validated? Consider scheduling with them to be available by phone right after the appointment. That way, if it doesn’t go well, you can minimize the emotional impact by decompressing right away.
5. Give positive feedback.
Consider sending a note when doctors treat you well; be specific about what was helpful. It will help them remember what to do the next time, whether for you or someone else, and will raise general awareness bit by bit!
More on Bias in Medicine
Some biases are explicit, meaning doctors are actively taught to evaluate, and consciously treat, some groups of people differently. For example, many doctors were taught that chronic, seemingly unrelated symptoms should be assumed to be a mental health problem until proven otherwise. This causes many of us with chronic, rare, and underdiagnosed illnesses to be brushed off and sent to counseling rather than treated for a physical condition. Some doctors may have been explicitly taught that chronic Lyme disease does not exist. They may consciously feel uncomfortable or unqualified to treat trans patients. Older doctors may even have been taught to be suspicious of “deviant” behavior (and therefore addiction and STI’s) if patients have a tattoo!
Understanding Implicit Bias
Perhaps a more pervasive type of bias is implicit bias — the assumptions and connections that we make subconsciously. For example, many doctors will — without realizing it — respond differently to white patients compared to patients of color. Statistically, women also tend to be told their symptoms are all in their head more than men. Compounding these intersecting identities, black women are repeatedly ignored, to the point of shockingly increased rates of fatality from common conditions like pregnancy. Doctors are not taught to ignore their complaints of continued bleeding, and are likely not consciously aware of any bias. Yet black women, when hemorrhaging, do not receive the simple care needed to save their lives.
Research & Bias
Even in research, bias affects medicine. The vast majority of test subjects, in both mice and humans, are done on (white) males. The reasoning for this is flawed, but the outcome is that a) treatment effective in studies may not be consistently effective for the people who need it and b) conditions more common in women, like most chronic illnesses, are grossly under-studied.
There are starting to be studies on implicit bias in medicine, and it shows both troubling, and promising results. Patients can certainly pinpoint explicit bias, but they also feel the effects of implicit bias, whether or not they know what exactly it was that felt uncomfortable. The challenge with implicit bias is that the doctor may not know, or believe, that they have any bias at all, since it’s not conscious. As such, it’s difficult to confront without citing the statistics and providing formal training.
The Good News
The good news is, things are being done to counter both types of bias! Activists like Allie Cashel and Lara Bloom are working hard to reverse the explicit narratives within the medical institution. Trainings and resources are becoming more readily available for doctors (or anyone) trying to work on their implicit biases.
As important as it is to confront bias and other barriers in your life, it is also helpful to be aware of the barriers you may not have faced. I have been trying to focus recently on the ways in which my privilege has positively impacted my access, as a way to counter the frustration of hitting walls. Checking your own privilege is also a crucial part of examining intersectionality and the solidarity needed to life us all up!
Have you ever had to confront bias in medicine? Tell us your story in our Friends in the Fight Facebook group today!