It’s been a while since I made a post. I’ve been busy reading, doing some writing for the book side of this project, working on PT goals, and managing flares. But I wanted to take a minute to talk about a concept my therapist introduced to me as I was discussing my frustration with medical care for fat zebras: Entitlement.
So often we think of entitlement as a bad thing. And surely, it can be. For example, when self-important privileged people, feel entitled to jump the line at the grocery store, interrupt some one who is speaking, or to implement racist/sexist social policies, that is a type of entitlement that is destructive to society.
But when we are talking about health care, we are talking about something that is (or should be) a human right. So many fat people have been conditioned through medical abuse and neglect to think about healthcare as something we have to earn through “good” behavior, rather than something we are entitled to no matter what.
Due to a family member’s recent experiences of BMI-based medical gatekeeping, I was feeling pretty hopeless about access to healthcare, especially surgery, for fat zebras. Though, I was only a witness in this situation, when we see other people who are like us being denied care, it is nearly impossible not to internalize the fact that we, too, may be denied care. And that is anxiety producing.
My science background drives me to look for evidence in moments like this. I know the research. BMI is routinely used to deny access to surgery, despite the fact that numerous studies show it has little to no negative impact on surgical outcomes. But, many doctors and surgeons don’t seem to be practicing based on the evidence. My social science background drives me to look at systems to understand why. Part of what drives the denial of care on the basis of BMI is malpractice insurance. Doctors need to keep their failure rates low to keep their insurance rates low. Fear of the financial impacts of surgical complications over-rides the evidence in many cases. I understand what is happening. Denial of care is rarely because doctors are horrible, uncaring people, but is instead due to our for-profit healthcare system–which privileges financial risk over care.
But understanding at an intellectual level only goes so far. I still have to live with the fact that I might be denied care when I need it most. And that denial of care may worsen my mobility and quality of life. A way I was coping was to think about my health and my future as though certain healthcare interventions just won’t be available to fat zebras like me. As though, they didn’t even exist. Pretend it is 100 years ago, and those are the options available to me. That puts me in the position of trying to prevent my symptoms from getting worse, which is not totally within my control.
That’s messed up.
My therapist suggested I work on internalizing a sense of entitlement to healthcare. This resonated with me. We all deserve care, no matter what. Unfortunately lots of different folks are denied care for a variety of reasons. For example, black people, especially black women, are routinely treated as drug seekers in emergency care. And research shows that many black people are denied access to pain medication due to racial bias. I have a friend who was sent home from a botched pelvic surgery with nothing more than instructions to take ibuprofen. Trans folks also experience widespread discrimination in healthcare settings. And, fat trans people are routinely denied gender affirming surgeries on the basis of BMI–a measure that does not have clear cut correlations with either poor health or surgical outcomes.
It is hard to internalize entitlement, especially when one is socialized on the basis of gender, race, class, or size, to feel lucky to get healthcare, to feel out of place in healthcare settings, to feel intimidated by the knowledge or status of doctors. On top of that, it is just straight up hard to navigate healthcare systems. It takes time and knowledge–something most of us don’t have.
But when it comes down to it, my mobility is just as valuable as a thin person’s. My quality of life is just as important as a non-zebra’s. Even research that shows correlations between BMI and poorer surgical outcomes, also shows improvement post-surgery for fat patients. I am not alone in believing that navigating the risks associated with surgery should be between a patient and her doctor. And, lots of research shows that the single biggest predictor of long term health and reduced mortality (risk of death) is physical activity and not BMI. So, I need to protect what mobility I have fiercely. I am entitled to care that helps me to preserve my mobility, even if that requires surgery at some point, and even if the outcomes are worse than they would be for a thin non-zebra, but still mark an improvement for me.
I want to also acknowledge that being ambulatory does not necessarily equate to mobility. What I mean here, is that we are all entitled to advocate for care that helps us to continue or improve our physical activity, in whatever form that takes for us. For some, that means being able to walk and exercise on our feet. For others, that may look different–but everyone’s mobility and physical activity is valid and deserves just as much care, regardless of whether they are ambulatory or not.
So, what does it look like to enact entitlement to healthcare as a human right in my life? I’m still working on this. But here are some ideas:
- Imagine what a thin, straight, wealthy white cis-man might expect when going to the doctor. Expect the same for yourself.
- OR, imagine how hard you would fight for a child who is in your life. Fight for yourself the same way. After all, you are someone’s child!
- When terms are confusing, insist on a clear explanation. Don’t leave until you get one.
- Expect to be accommodated. That doesn’t mean that you might not have to check ahead about accessibility. Internalizing entitlement means that we don’t see accommodation as a burden on others, but something we are entitled to as a right (because it is).
- Bring someone with you to doctor appointments who can help you advocate if you have a hard time doing it for yourself. Sadly, it often helps to bring someone a little more privileged than you. Many women who are married to cis-men note that they get better treatment when they bring their husbands with them. Of course, not all of us have husbands!
- When decisions are made that feel like they may be based on bias rather than evidence, ask the provider for the evidence. If that doesn’t work, tell the doctor that you think bias may be at work.
- If you think tests, imaging, or some other type of assessment or intervention should be done and the doctor is brushing you off, ask them to document that they have declined to assess/treat you.
- Find a new provider, if you are able to. This one can be tricky for folks who are using medicaid insurance, who are on managed care, or who live in rural areas, where the network is limited. But there are almost always other options. And there are some phenomenal doctors out there! YOUR health, mobility, and well-being are worth the extra effort to find someone who will treat you.
- Remember you can interview new providers if you want to! Just make sure to tell the scheduler you have lots of questions for the doctor so they book enough time. When you have a first appointment you are allowed to ask all kinds of questions about the provider’s approach to care. Ask about their thoughts on BMI and any other issues that might help you avoid surprises later.
- Take research with you to the doctor. One of the coolest thing about the internet is that many of us can access PubMed and find, at a minimum, summaries of health research. Full text articles can often be gotten by emailing the authors directly and asking for it. Many are happy to provide access. It may be confusing to you, but work on building your health literacy. If you are a fat zebra you are gonna need to learn as much as you can. Google is your friend! Patient forums are also a good place to build your knowledge and ask questions.
- If you have a bad experience, say out loud to yourself: “It’s them, not me that’s the problem. My body deserves care just like anyone else’s.”
What other suggestions do you have about how we can work on internalizing entitlement to healthcare?