• arielaaviva

Privilege and Intersectionality as a Patient

First of all, anyone who bristles at the word “privilege” -- you’re not alone! I had a really tough time understanding different types of bias and privilege. I’d encourage you to check out this article before preceding. I found it really helpful!

Working with diverse learners who have not found success in public schools, I’ve become keenly aware of my own privilege, and the privileges necessary to enable students to thrive in school. Some of this privilege comes from larger, uncontrollable aspects of identity. Race, culture, genetics, income, and geography -- to just name a few -- can have a massive impact on one’s school experience. Other factors like parental involvement, trauma, sibling relationships, social strife, etc. can also make or break someone’s ability to learn.

I’ve also come to realize that health (encompassing physical illness, mental illness, and disability, as well as how those three intersect) plays a role. This should be a duh for me, having struggled so much with my health as a youngster, but I had so much other privilege -- time, money, supportive family, respect from teachers, “traditional” learning style -- that I was able to do well, despite the struggle. I started to notice as a teacher in alternative schools, though, that almost all of the students we saw had some sort of chronic illness.

Once I figured this out and was able to talk openly with students about their health, their engagement in school drastically improved. It’s just so isolating to try to focus in school when you feel like crap. Simply having a teacher really see you and your experience and give you leave to move around or put your head down or snack when you need it takes away some of the isolation, shame, fear, and weight of the experience.

I could write several essays on student health in school, and hopefully someday I will! But for this post, I want to take a look at how privilege similarly affects our experiences in the American healthcare system.

The concepts below are largely about intersectionality. If you haven’t heard that term before, or don’t fully understand it, I’ll refer you back to the article I posted at the top, as I think it explains it beautifully.

Here’s the deal -- I’ve grown quite resentful of my life-long experience in the medical system. I wasn’t believed. I was told it was all in my head. I was bumped from specialist to specialist, no one taking responsibility for my actually needs. Occasionally, I was scoffed at and made to feel unsafe. When I first heard a specialist at the global conference address doctor induced PTSD (or medical PTSD) -- an assertion echoed by many of the speakers at that conference -- I burst into tears, finally having a name for what I’d felt for years. I have PTSD.

It was created largely by my time with doctors. It’s to the point where I’m pretty sure the neurologist who looked at me like I was scum and brushed me off as anxious, reasonably came to that conclusion because my heart rate was so high upon simply entering his office that there’s no way it would have gone up 30bpm upon standing (diagnostics for POTS).

But I’ve come to accept something about my medical PTSD -- it totally sucks and is the result of very real trauma, but it is also drastically more manageable due to privilege. The more patients I meet, the more I realize just how lucky I was.

I am white.

It may seem odd to some of you that this would make much difference in a doctor’s office, but research shows that there are actually huge discrepancies between how white people and people of color are treated by doctors. I don’t believe that these doctors are purposefully practicing poor medicine on people of color. It’s mostly due to implicit bias. For example, black patients are significantly under-treated for pain compared to white patients. This is partly due to incorrect beliefs held by some doctors about biological differences of different races. Implicit bias also plays a role, however; if someone goes in with chronic pain, the doctor is more likely to be skeptical of prescribing narcotics if they are black, and are more likely to be inquisitive and try to find the underlying cause if they are white. Even the amount of time doctors spend in the room with patients, as well as how much of that time they spend listening versus talking, and the inclusivity of words used, are influenced by implicit racial bias. The fatality rates in black women (and their babies) during childbirth is up to 6 times more likely than white women. In fact, the fatality rates are becoming worse than some third world countries. Many of these women told their physicians that something was wrong, but simply weren’t believed, until they ultimately died. And by the way, as stated in this article and video, this is not even a bias against income or education level -- wealthy, highly educated, black women still have atrociously high rates.

I do want to mention here that I believe being female has negatively affected my credibility with some doctors. Bias plays a role in both of these cases (race and sex), but also part of the problem is that most medical studies are done exclusively on male rats or on white male people. Therefor, what has become standard medical procedure my not cut it for women or POC.

I am cisgender.

No doctor has questioned my sanity or credibility simply due to my gender expression (although that have questioned my sanity). No doctor has told me that my illness was my own fault because of my gender. No doctor has refused to care for me because my gender makes treatment "too complicated" for them or because they were never trained to help people like me. I've witnessed medical professionals repeatedly using the wrong pronouns and even name when treating trans patients. Denying someone's identity, even their name, and then asking them to be vulnerable, share their personal experiences, and disrobe, is traumatizing.

Similarly, I'm sure some LGBQIA+ patients experience biased care. I am not straight, but I pass well enough that I don't think any of my doctors have ever known.

I am science smart.

Based on what I’ve seen as a teacher, I don’t actually believe that people are “smart” or “stupid” -- it’s far more nuanced than that. But I do have a natural knack and passion (and a good education) when it comes to science. My parents are both in medical fields as well, so I can understand “doctor speak” and really make sense of what doctors tell me. I can spot inconsistencies and know when to ask more questions. For example, when I was misdiagnosed with genital herpes, I was able to ask "but doesn't herpes cause blisters? These look more like ulcers." Then, when corneal ulcers made them change the diagnosis to Behcet's (also false), I pointed out that Behcet's usually causes retinal damage, not corneal.

I am educated.

This is similar to being science smart and good at research, but I think I come across to doctors as educated. So not only do I actually understand what’s going on, but doctors show me more respect and credibility than they would if they subconsciously didn’t see me as “smart” or educated.

I have time, and training, to do thorough research.

I research the best doctors. I find the latest medical literature describing my conditions. I go to conferences to hear directly from researchers and specialists. I know how to sift through articles of varying degrees of credibility. I can synthesize info from patients I meet, crowd-sourcing through support groups, and articles written. None of this would be possible if I hadn’t had good school support in research and, more importantly, the time and access to technology! It’s a huge undertaking. I have enough money to not have to work every second I have spoons and still survive. On that note…

I have money.

Sure, I don’t have a ton, and certainly not enough to feel thrilled at the massive medical bills that come my way, or to pay for fancy shmancy health insurance. But I have enough money to safely be able to keep up with bills without going into debt. I can make medical decisions based on what’s safe and best for me, rather than on whether or not I can afford it. Also hugely important -- I can afford the right food! I can afford to eat clean, nutrient-dense, local, fresh, organic food. It’s not cheap, but it can make a huge difference.

I have family support.

I can’t stress this one enough. My family shows me unconditional love and support, believing me even when evidence (and doctors) say otherwise. The emotional impact of that has made the most difference. I can stand up to doctors if I know that my family has my back and will be as pained as I am if things don’t go well. I also know that, given my current state of underemployment, if I ever do need a huge procedure that I for some reason can’t afford or can’t physically do on my own, they would be there to get me through it until I could pay it off and be on my own.

I am married.

I didn’t realize how much of a difference this makes at first, but having a partner means that I have another person in my living space who understands my needs, can step in if things turn south, and can help me out with things like taking out the trash or giving me rides when I can’t walk. I don’t need to rely on social support systems for meals, rides, etc, and feel loved even at my worst. He also can pick up the slack financially when I'm not able to work much.

Physical appearance

I know this may seem odd for me to comment on, but honestly I think what we look like (and not just race, but size, weight, stature, how well we fit conventional beauty standards, etc) has a huge impact on how people perceive us and thus how they treat us. I am cute enough that people seem to find me approachable. Most importantly, I’ve always been a “good” weight. Unfortunately, many patients who are larger than me find that all of their symptoms are reduced to “have you tried losing weight?” This not only diminishes the very real problems that aren’t related to weight, but also implies that it’s all their fault for not trying hard enough to lose weight. It also may not take into account the challenges of losing weight when you can’t exercise or control what you eat. It also completely ignores that diversity in body size is not necessarily an indicator of health. In fact, I’ve had many more comments about my weight since I have been feeling better (aka finally absorbing nutrients), then when I was underweight and unhealthy.

My mom is a doctor.

This may be the most significant privilege. Doctors take me seriously when she’s there. They don’t belittle me as much, they don’t dumb things down for me, and they allow for more questions. Sure, they don’t always appreciate the interrogation she (understandably) puts them through, but they understand where she’s coming from and that she knows enough to ask those questions. More than this, some days my medical PTSD is triggered and my symptoms are flaring and my brain just can’t hold onto the information or even make enough sense of it to take notes. My mom will hear it, understand it, and either write it down for me or talk to me about it when I’m able to absorb the info. I am SO grateful for this. I am also glad she is a doctor so that when I inevitably start to resent all doctors, she’s there to remind me that just because the situation sucks, doesn’t mean the doctor was actually a bad person. They may be only allowed to spend 20 minutes with me. They may have compassion fatigue and burnout. They may just be following what they were taught in med school, that multiple unrelated symptoms is psychosomatic until proven otherwise. This perspective helps tremendously when it comes time to face the monster and meet yet another new doctor.

I hope that through reading this, you appreciate my honesty -- it’s not always easy to be open about your privilege, but I think the more we do it, the better the world will be. I also hope that you will be able to look inward and appreciate the privileges you have, especially when it comes to health and healthcare. I could also write a lengthy piece about the ways in which my medical care is unfair, but it’s so much more productive for me right now to remember the blessings I’ve been granted. But most importantly, I hope you’ll use this push to find ways to fight for people without your privileges. Help someone without insurance find affordable care. Help advocate for a transgender friend or find them a gender-affirming clinic. Go to the hospital with someone whose neuro symptoms are making it impossible to advocate for themselves.

One person showing support during a frightening medical experience can make a world of difference <3

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