You Can Leave the Appointment
preparing for and dealing with medical abuse and neglect as a fat patient
Content warning: explicit descriptions of medical abuse, neglect, and CPTSD.
This essay began as a response to someone in a fat-positive group asking how to walk out of doctor appointments when encountering weight-based discrimination in healthcare settings. I have done this many times, usually in a panic attack induced by medical abuse and neglect, specifically about my weight; these situations have frequently taken weeks or sometimes months of recovery afterward. I’m a white, middle-class, infinifat, non-binary person with severe complex post-traumatic stress disorder; “severe” is my own description, based on the number of years I spent frequently suicidal and having multiple panic attacks a day, primarily in response to fat stigma from family, friends, and specifically in accessing medical care. I have tried out various self-advocacy techniques I have learned from others: Black women activists, disability activists, fat activists, and other fat friends and communities.
I share these self-advocacy ideas as an offering of community care and not as my own creation.
- Referrals
- Lies
- Documentation
- Getting Out
- Afterwards
Referrals:
The first step of referrals is asking your friends and local community members to recommend their doctors to you. Many online fat communities maintain a list or periodically do super threads of fat-friendly providers. Pay attention to specifics from peer recommendations: some doctors will be recommended at a practice and not others, and some folks may recommend a provider based on their experience as a smaller fat person or as a person with more privilege according to race, age, appearance, gender, etc.
The second step of referrals is asking a trusted medical provider that’s already proven themself to reach out to colleagues on your behalf. In my case, this doctor has been my endocrinologist for over a decade. They are not what I would call fat-positive, but they are fat-friendly and trans-friendly. She was the first doctor who really listened to me when I said, “don’t weigh me, don’t suggest diets. This is harmful and horrible to me.” It took a few years of us working together, me providing books and resources the doctor respected, and tough conversations about body stigma to really trust one another. I feel that it was mostly luck and privilege that we connected, and that I can still see her after so long.
I also have managed to find fat-positive or HAES-aligned therapists and dieticians over the years who are fat themselves or excellent allies; it has been easier to find them than other kinds of providers, but I’ve also had the ability to pay out of pocket to access treatment for a restrictive eating disorder and CPTSD. I wish it weren’t luck and privilege — I want to be able to offer more specific steps in finding your own trusted provider.
Another form of referral that can assist your self-advocacy is asking a trusted provider to write a letter that explains that you require no weigh-ins and why. I have letters from my therapist and my dietician that explain this, and I also have a short cover letter with my medical history, current medications, and that I do no weigh-ins. I ask reception or the nurses to add it to my file or to give it to the doctor before they come in to see me. This has sometimes worked.
Lastly, not a referral but a good thing to do before an appointment you plan to do self-advocacy in, make a recovery plan. If you have family, friends, or services that can pick you up in an emergency, call to make sure you don’t get behind the wheel while suicidal, babysit your kids or pets, and help you eat or do other intimate care tasks if you need them, write it down on a list.
Lies:
Staff will make up all kinds of lies about why they need a weigh-in— that they need it for insurance, for medication dosing, or for a machine that won’t work unless they know a weight.
Most people’s insurance does not require a specific number input or value for a doctor’s office to file for reimbursement; it is the right of any patient to decline tests like blood pressure, height, or weighing. One provider has told me that insurance accepts “declined” as a value in these areas, and you can also call your own insurance to ask if this is true. The customer care reps you reach may not know the answer or who to ask, but they can sometimes confirm this. And, while lacking insurance is a major access issue for many, if they aren’t billing to insurance, they don’t need to submit anything.
On medication dosing, a great majority of medications are not dosed for specific weights above 100lbs. Two exceptions to this are things like anesthesia and chemo. I have found the claim of needing weight for medication dosing the easiest to counter in the moment, because I can assure the care provider I will gladly step on a scale if such a medication is needed. There is sometimes an unintentional lie that providers may tell: sometimes medications won’t work over a certain weight, but this is still not broadly known even by prescribers. For example, “Plan B” medication is unlikely to be effective over 160lbs.
The machines bit can be tricky because that can be true — some equipment like treadmills have a weight limit and it can be a safety concern if a machine is not built to support a larger body. Similarly to medication, larger-bodied patients might also run into lies about weight and body size in reference to machines or tools that will not work for them: using too small a blood pressure cuff will cause falsely high blood pressure readings and the wrong needle length can cause some vaccinations to be less effective. Providers may falsely reassure or blow off requests for appropriate equipment to be used.
I have also personally experienced and known several people who are told lies about the weight limits of equipment and medications used in surgeries, especially for labor and delivery or for gender-affirming surgeries. It’s not an uncommon story for a fat person to seek care and be told they do not qualify because their BMI makes them too high of a risk. Often, dangerous weight-loss medications or weight-loss surgeries are recommended in order for folks to qualify. This is blatant fat stigma blocking access to life-saving surgeries.
All of these lies are attempts to force compliance. When countering care providers’ lies with a known, researched truth, they are often embarrassed, angry, and defensive (I would be, too). However, sometimes the providers will then be honest: some nurses have fought with me tooth and nail, and finally admitted that they could be disciplined if they can’t get patients to comply, regardless of whether or not a weigh-in is actually needed. It’s worth a reminder that many healthcare workers, especially support staff, are run ragged for low pay; this gives us context for shitty encounters, but doesn’t mean that you aren’t entitled to your rights as a patient.
Documentation:
If you’ve made it to this point in your medical encounter or have been practicing getting referrals and advocating for yourself against compliance-enforcing lies, you will likely come to the documentation stage next. It is often recommended online to request a care provider’s refusal of tests or care to be added to your chart or recorded through a letter of refusal.
The key to this may be more intersections of privilege: smaller-bodied people, conventionally attractive or charming people, or patients who have “straight-sized” companions attending appointments with them seem to have the best luck with this approach — people share stories of asking for a doctor to document refusing a requested test, for instance, and then the doctor will reconsider and order the test. When I first encountered this advice, I thought, “aha! This is going to be the best thing to turn to in my self-advocacy arsenal!” Instead, it has revealed the lengths the medical industry goes to protect its own bigotry and oppression: they simply refuse to provide documentation.
Again, these folks know that what they are doing is both ethically wrong and usually against their own organization’s stated policies on patient care. This has been the point where I encounter the most hostility from care providers and their support staff. They move away from trying to force compliance and instead focus on protecting themselves from liability. I have seen this happen many ways: one doctor and office manager insisted that only one doctor was allowed to write a denial in my record, and that doctor was out of the office; a manager of a large, regional system of offices said I could use the record of my phone calls to the office as a record of denial, but after contacting the tech department, there was no way for a patient to do that; other doctors have sent denials of care or admissions of wrong-doing in a patient portal system and then deleted those messages later.
This may also be the point in which you seek out a patient advocate. It’s important to remember that these folks’ job is ultimately to protect the medical practice or system from liability. Many that I’ve spoken to seem upset or invested in righting the kinds of mistreatment I’ve had, but it’s impossible to tell if this is genuine. Their hands are often tied to the same lines that office managers will give in an effort to avoid liability.
Ultimately, the end result for me has always been that these professional managers and advocates will say some variation of, “you have declined to be given care by us.” It doesn’t matter how well I state my experience or provide my own documentation, including damning audio recordings: they just refuse to document the denial of care and instead say I have declined it. Often, they add their own harmful messages in trying to justify these abuses.
Getting Out:
TYG — trust your gut. If it feels wrong, if the staff won’t take no for an answer, or if you feel harassed or bullied, you are allowed to leave at any point. You can leave a doctor’s appointment at any point. There are risks: you may be charged for an appointment you walk out of, your insurance may be billed or may not be billed, or you may be (unofficially) blocked from making appointments at the same practice again, which could be dangerous for people who don’t have a lot of options for care providers. Additionally, it may feel like you’re doing exactly what the abusive care providers are saying in “declining care.” It’s okay. It is reasonable to refuse to be bullied and harassed — and I suspect most of us can’t access legal action to address these problems, so “declining” by walking out of a dangerous situation isn’t going to tank a nonexistent legal case.
If you need to get out, get out of there.
Over time, I developed severe, debilitating CPTSD from years of medical neglect and abuse. I have had several panic attacks in these types of moments, and both run sobbing out of offices and gotten “stuck,” frozen in a shutdown on a doctor’s table, unable to speak. I have sometimes managed to get out of the office before shutting down in my car or on the ground in the parking lot. I’m thankful to have stumbled into trauma-specific therapy in the past few years which has helped me avoid more of these situations, and I feel more confident now in my ability to simply leave a basic medical situation that is more dangerous than helpful to me.
You are allowed to leave!
Additionally, therapy has helped me do a much better job of figuring out if I’m in a dangerous situation or not. This is a very personal skill that you can practice in a way that works for you — everyone has different expectations for care, and your needs may not be as strict as what I have needed in the past. What are your own boundaries and limits when it comes to medical care and treatment? It can change from appointment to appointment or doctor to doctor.
Sometimes, doctors are fine to table a conversation about weight after they ask about it. I have sometimes said to a doctor, “I’m not interested in talking about this with you, but I will if I am ready,” and they are satisfied to provide other care. If, like me, you struggle with trauma from care providers, it can be difficult to recognize whether these instances are safe enough to continue for you personally, but I suspect that the most common sort of patient self-advocacy about weight is this sort of uneasy reassurance that you might revisit the issue another time, or refocusing a conversation on the issue you are there for.
The last thing to remember is the one I struggle the most with but do sometimes use: complying. I used to feel that, if I complied with unethical, harmful requests and care in order to access some other kind of care, I was betraying myself, the scientific truth, and my fat friends and community. I have known other people to express this feeling, too. Compliance to stay safe is stressful, upsetting, and can make us question what is real — but is a very real tactic that many of us use at some point or the other. And, it’s not a linear process; if you advocate for yourself by refusing to be weighed at one appointment and then at the following appointment do a weigh-in, you are still self-advocating.
Afterwards:
Remember that support list you made before the appointment? It’s time to call in your support network and lean on your personal methods of self-care!
Self-care is a term that was originally popularized by The Black Panther Party. It’s been co-opted by many white folks (like me) to sell you all kinds of products and services — some perfectly fine on their own, some harmful in their own right. Black folks and other folks of color have been doing self-advocacy in the face of systemic violence since white supremacy started its violence; it’s really important to remember the context of this as we aim to craft and share our own methods of self-care, both to remember it as a key practice of Black activism that is ongoing and that it doesn’t have to be tied to mainstream American consumerism to be helpful.
Regardless of whether you walked out of your medical appointment in self-preservation or not, ask for or accept support if you can. The list you made earlier is great: ask for babysitting, ask someone to come sit with you and watch TV, order yourself some takeout, scream in the shower, cry facedown on the floor, lean into pleasure from sex, food, or cannabis — literally whatever will help you reorient yourself. There is no wrong answer for this, even if it feels embarrassing to write it on a list.
If you struggle with CPTSD or some other illness, you may go through more specific or serious periods of dissociation, suicidal ideation, exhaustion, or panic. You may shut down and sleep, or write desperate or angry pages of posts on social media. You may need to talk to a friend, community, or professional about what you went through and how you handled it. You may just need time with as few expectations on you as you can manage, which is much easier to arrange if you have a list of your options written down already.
“Look for the helpers. You will always find people who are helping.” — Fred Rogers
For me, I have only recently begun to be able to recognize that, so far, I’ve always found a doctor that I can work with to access the care I need. The process has been long, miserable, and I am certain it has taken a serious toll on my health over time, but I do currently have doctors I trust for my basic needs. I hope that everyone reading this will be able to have this, eventually, even if the providers aren’t providing everything you need.
There is no guaranteed way to access healthcare, for many or even most of us — as humans, not just Americans. Some of us have enough privilege to “luck” into the right situations that care for us more than hurt us. But, there is a growing number of activists doing hard things to help us all access care that we need, and even the diet and wellness industry has begun to understand that the most blatant fat stigma is starting to become frowned upon.
Find your community: look for the helpers. They are your neighbors, your friends, your family. None of us come to body liberation or self-advocacy fully formed and without error; we all will always have more stones to overturn and unpleasant things underneath to manage. There will always be helpers; turning towards vulnerability, love, and connection helps most of us, if we can strive for it.
Take care, friends!
