The Complete Guide to Becoming Your Own Medical Advocate

The Complete Guide to Becoming Your Own Medical Advocate

By Alvin Brian Vlogs | Cypherpunk | 1 Jun 2020

  • When medicine is big business, we have to become the CEO of our own bodies


Photo by annca


Ellen Maud Bennett is dead.

By the time her cancer was diagnosed, she had only days to live. Part of her obituary reads:

“A final message Ellen wanted to share was about the fat shaming she endured from the medical profession. Over the past few years of feeling unwell, she sought out medical intervention and no one offered any support or suggestions beyond weight loss. Ellen’s dying wish was that women of size make her death matter by advocating strongly for their health and not accepting that fat is the only relevant health issue.”

It’s not just fat patients who get poor medical care. As insurance practices force doctors to spend less time with patients, competent, high-quality care can be difficult to come by for anyone. But your odds get worse if you are a member of a marginalized group — like a woman, a Person of Color, Queer or Trans person, disabled, or fat.

My friend and filmmaker Darryl Roberts once said to me , “we have to become the CEOs of our own bodies.” He is exactly right.

In this piece I’ll honor Ellen Maud Bennett’s memory by showing you how to advocate for yourself in ways that will help overcome the downsides of for-profit medicine, as well as biases (explicit or implicit) that providers hold, so that you can get appropriate, competent, high-quality health care.

My own life changed when I realized that I could have a say in my own healthcare, and that I deserve a healthcare experience that is ethical, evidence-based, and aligns with my goals. You deserve that, too.


Why Be Your Own Advocate?

Someone else might not be around

Hospitals may have advocates who you can request (sometimes known as medical advocates, sometimes as social workers) but that’s not always the case. And while bringing a medical advocate to the doctor can be incredibly helpful, you might not have that option.

Maximize your time with the practitioner

As for-profit insurance drives down what doctors are paid in order to maximize profits for CEOs and shareholders, doctors can be forced to see more patients and spend less time with each one.

Being well-prepared for your appointment can maximize the time you have with your doctor and other practitioners. Being informed—and having information at the ready—means that you can expedite the diagnostic process and give them the maximum possible time to practice their healing modality.

Overcome the provider’s bias

There are some biases that is specific to medical care. For example, Tené T. Lewis, an associate professor of epidemiology at Emory University Rollins School of Public Health in Atlanta, told US News and World Report:

“If you are African-American or Latino and you present to the emergency room with a broken leg or a kidney stone, for example, you’re less likely to be given analgesics at the recommended level… it doesn’t matter what part of the country you’re in, it doesn’t matter what type of place you’d present to, that we’ve seen fairly consistently.” In addition, she says, there have been similar racial differences found in cardiac care and some studies showing delays in kidney transplantation rates.”

Chronic pain patients can face tremendous bias, which only increases with intersectional marginalized identities. To make things worse, changing doctors to try to get a competent practitioner can be trigger suspicion of drug seeking behavior. Doing your research ahead of time can be incredibly helpful (though, again, it should not be necessary.)

It’s your body

There may have been a time when it made sense to put healthcare providers completely in charge of our health, but that’s no longer the case. We need to be part of our healthcare team. No matter how amazing your healthcare practitioner is, they have a bunch of bodies to take care of on any given day. You only have one body — yours — so don’t be afraid to get involved in your own care.

The Dream Appointment

Before we get in there and start advocating for ourselves, it’s helpful to decide what we are advocating for. What your “dream” appointment looks like will vary from person to person, but here are some basics:

Diverse and comfortable office

You walk into an office where the staff, artwork, and magazines are diverse, so that people from many backgrounds will see themselves represented and feel welcome. There are different kinds of chairs — armless or loveseats for those who need more room, chairs with sturdy arms for those who need to use them to get up and down, and plenty of room for wheelchairs and mobility devices.

Friendly and accepting staff

The staff always makes you feel welcome, and never judged. They have accurate medical records and know your special requests (for example, that you choose not to be weighed, or that you are a survivor of sexual trauma and special care should be taken before touching you).

Attentive and informed practitioners

The practitioner asks for, and listens to, your reason for this specific visit, and asks questions to contextualize it within your greater goals. They encourage you to do your research and be informed and involved, and they welcome your questions. They never make recommendations based on stereotypes or assumptions, and they provide treatment options that are based in research (and never in bias). Those options are in alignment with your culture, values, and overall goals. They provide additional resources for you to educate yourself. You leave feeling like you have a solid strategy and a provider who is part of your trusted team.

Create your own list

Think about what’s most important to you in a health care provider. It might be similar to the things I describe above. Other factors to consider might be openness to alternative treatment modalities, support for your dietary preferences, and similar alignment with how you choose to live your life. Of course, practical matters like location (including access to public transportation if needed), accepted insurance companies, and online systems for communicating or accessing records can also figure highly in your choices.

Make some notes of your vision of what a good health care practitioner is like. Then you’re ready for the next step of contacting providers and making an appointment.


Contacting Providers: Before Your Appointment

Research your provider

I don’t know why it took me so long to start doing this, but after walking out of one too many appointments with fatphobic medical providers, I realized that I could do some work on the front end and avoid a massive waste of my time and energy. Now I don’t make an appointment with a provider without doing my online research and having a phone conversation.

The internet has made getting information about your doctor a lot easier. You’ll likely start by looking up which providers are in-network for your insurance. Then you can start checking out practice websites, and review sites. ZocDoc is a review site where the phone-averse can even make their appointment, but there are plenty of others to choose from. For plus-size folks, IsItAmple and FatFriendlyDocs can be lifesavers (literally).

You can also call your provider’s office and, without giving them any information about yourself, get information that is vital to you — remember your list: are there any practitioners of color? Is this practice affirming of transgender people? Will this practitioner work from a Health at Every Size perspective? Is this office sex worker-positive? Again, you can do this anonymously or using a pseudonym, then call back to make an appointment if you want.

I’ve done this for myself, for friends, and for family, and it’s been super easy. I start by saying, “I’m looking for a new provider and I just had a couple quick questions about your practice, can you help me with that?” Once I get the right person on the phone (typically it’s the person who answered), I just ask the questions. While I can’t promise that every experience will be the same, I’ve done this dozens of times I’ve never been asked for my name for any information. Every once in a while I end up getting transferred to someone else, and everyone has always answered my questions and, even if I didn’t get the answers I wanted, they’ve always been friendly.

Making the appointment

When you make your appointment, you can ask that certain information be given to the practitioner. For example, that you have a history of eating disorder treatment and you are not to be weighed unless absolutely necessary, and that you should be weighed facing away from the scale and not told the number. Or that you have a history of trauma from healthcare practitioners that leads to white coat hypertension (high blood pressure that is the result of being extremely nervous at the doctor’s office). You might want to explain that you have a history of sexual assault and so need special care during any vaginal examination.

I do this every time I make an appointment — even if it’s with a doctor I’ve previously worked with. I find that this is a good first step, and it can be easier to do it over the phone so that when you are there in person you know that you’ve softened the ground.

Research your situation

Here, the internet can be your friend. Looking up your symptoms can give you some ideas for what might be going on, what questions to ask your provider, and what the standard diagnostic path might be. This can be very helpful if you fear that your provider might inappropriately dismisses your symptoms — sometimes a little pressure can get you the tests you need regardless of practitioner biases, or address any other issues that may get in the way of your care.

I have a friend who woke up with extreme back pain the day after moving. She went to the doctor, who told her that it was because she was overweight and that the only solution was weight loss. She was prepared for this, and so she said “that doesn’t seem right since I’ve been fat all my life, but the back pain only started after I spent a day lifting heavy things. Based on my research, it’s much more likely that acute onset back pain is due to lifting heavy things yesterday than being the same weight that I’ve been my entire adult life. Can you explain to me why you feel that’s not the case?” She got the treatment she needed.

You don’t have to lead with this information, but you can have it in your back pocket in case your provider says something that doesn’t make sense.

Create an action plan for the appointment

No matter how well versed you are in your situation, the doctor’s office can be a place where you forget your own name. There’s a common phenomenon called a “door knob” question. This happens when the patient waits until the end of the appointment, when the doctor’s hand is on the door knob to leave, to say “also, I have this weird growth…” At that point, the practitioner is often out of time and has to ask the patient to set another appointment for something that should have been a higher priority.

The bottom line is that writing things down ahead of time can help you organize your thoughts before and during the appointment so that you make the most of your time with the practitioner. Here is a sample format that you can use.

  • Goal(s) for this appointment
  • Symptom(s) I have
  • Concern(s) I want addressed
  • Question(s) I want answered
  • Numbers for the doctor — this may involve things like bringing your glucose monitor, or a log of when/how often you use your inhaler, or anything else that the doctor has requested or that you think might be helpful.
  • Research — You can print out (or save on your phone or tablet) any research that you think you might want to bring up.


Choosing Your Approach: Overcoming Bias

How you decide to approach your healthcare provider will depend on a number of factors. The primary factor is that, while you are allowed to advocate for yourself, doctors are allowed to refuse to treat you in non-emergency situations, including because they find you disruptive or difficult to handle. In the best case scenario, you and your doctor act as a team. But the reality is that health care providers wield enormous power in our lives, and it can be a challenge simply to speak up for yourself.

It’s not fair. Often, this power dynamic is an extension of the practitioner biases that create problems in the first place. Most of these things shouldn’t have to be consideration, but the reality is that until we are able to dismantle marginalizations that exist, they are a reality you can prepare for. Here are some questions to ask to help you decide on a strategy.

How many doctors do you have access to?

I live in LA and, at least for the moment, I have good insurance. I can practically fire a doctor every day and not run out of options. But when I was a kid and my family lived in rural Montana and didn’t have insurance, that was not the case.

A friend of mine stood up to an incompetent pediatrician, only to find out that he and the other pediatrician within a 100 mile radius worked together — leading to her being black-balled by both and not having access to non-emergency care for her kids.

If you don’t have a lot of options for doctors, you may be forced to make some difficult choices about how to work with the doctors you have.

How critical is this situation?

If you upset a healthcare practitioner and they refuse to treat you, or if you decide to walk out of your appointment, how much will your health suffer while you find another doctor and get another appointment? And, if you do find another doctor quickly, what are the chances it will happen again anyway?

Sometimes I’ll put up with a crappy doctor in order to get what I want as quickly as possible (diagnostic tests, refill of a prescription, etc.) and then I’ll circle back. After I have what I need, I can confront the doctor (while I search for another one!)

What is your personality/confrontation style?

I tend to be very a very direct communicator with doctors, and it’s just lucky that this makes confrontation easier for me.

I once went to the doctor with strep throat. They did the rapid test, confirmed strep, and told me the doctor be in to see me in a minute. The doctor walked in, looked at me and said “what are you doing about your weight?” I ignored his question and said “What are you doing about my strep throat?” He said “no matter what’s wrong with you, you’ll feel better if you lose 50 pounds.” Sick and exhausted I replied, “not if I have cancer.” He literally threw his hands in the air and said “What do you want from me?” I asked “What. Do. You. Give. Thin. People. With. Strep. Throat?” banging my hand on the table with every word. He answered “antibiotics.” So I said (practically yelled), “Let’s have some of those!”

This style works for me, but your personality and confrontation style may differ. Are you someone who welcomes confrontation? Or does that thought of it make you want to lock yourself inside your bedroom? Neither of these is right or wrong, but it will inform how you talk to your healthcare provider.

This can be especially important if you are someone who cries in situations of confrontation. There is absolutely nothing wrong with crying, it is a completely reasonable response—but provider bias can mean that they take you less seriously which can compromise your care.

If you are prone to crying (other being emotional in other ways that scare people) and want to curb it, get help from a friend, family member, or even a mirror and do some role play. Think of the things that could go wrong, and practice various responses until you feel comfortable with what might happen. There is something about allowing the emotions to surface, and work through them, that helps you keep them in check when you are in the same situation later.

Unfortunately, some practitioners have an ego issue that will cause them to lash out at patients who have done research to prepare for an appointment, or who advocate for themselves. Depending on the above factors, there is no shame in taking an approach that strokes the provider’s ego while still getting you the care you need. You may choose to switch your approach with different providers or situations.


At Your Appointment

Check in

If you gave any special instructions when you set your appointment, double check with the receptionist to make sure they have it down. Just say something like “I just wanted to double check what we agreed to on the phone when I made the appointment…”

Just say no

You have the right to decline any procedure. Many people choose to skip the weigh-in because they have a history with eating disorders, or because weight is used by their provider to ignore their actual health concerns. I do this with as little confrontation possible — the nurse stops and says “step on the scale.” I smile and say “no thank you” without breaking stride. The nurse typically follows behind me with nothing further needing to be said. If they push, I explain that I’m willing to be weighed if t’s necessary to prescribe a medication or for some other reason, but otherwise we’re going to skip it.

Blood pressure may also be refused if you have white coat hypertension, or if they don’t have an appropriately sized cuff. Often larger people get diagnosed with high blood pressure when the problem was that the measurement was taken using a cuff that is too small. If they don’t have a blood pressure cuff that is properly sized for me I simply say, “I decline a blood pressure reading, and please make a note in my chart that you failed to have the appropriate cuff size.”

If you’re wondering why they are pushing so hard, it’s often because it’s attached to money. For example, some insurance will pay for weight loss counseling based on a patient’s BMI. In order to get paid for that, they have to calculate BMI which requires height and weight. As an expert in weight and health, I know that there isn’t a single study in which this type of “counseling” has led to significant long-term weight loss for more than a tiny fraction of people, and so I’m utterly unwilling to have it paid for on my behalf. I’ve also noticed that even though no such counseling takes place in my appointment, doctors often charge for it anyway, which I always report as fraud.

In some cases, they’re asking because they are evaluated on the number of baseline measurements they get (including things like weight, blood pressure, temperature etc.) While all of that is well and good, this is my health and my appointment and my choice. I always offer to sign a waiver. If things get formal, I use the phrase “I’m exercising my right to refuse any medical intervention.” (To be clear, I don’t think taking my weight is a medical intervention, but if they are going to treat it that way, then I’m going to use it to my advantage).

State your case

Be ready to be clear about what you want the practitioner’s help with. To avoid defensiveness, try not to diagnose yourself at first; just give the symptoms. So rather than — I have a sprained ankle, say “I’m here because I twisted my ankle and it hurts, I want to see what’s wrong with it and how to make it better.” Rather than saying — I think I may have arthritis, say “I’m having pain in my finger joints, it’s worse in the morning.”

As the appointment continues, if what the practitioner tells you isn’t jiving with what your research found, it’s absolutely appropriate to ask questions. You can bring notes and/or your research to help. If your doctor becomes upset about the idea that you have chosen to be a well informed patient, you can say something to diffuse the situation like “I know I’m not a doctor, I just want to be informed about my own body. What do you think?”

Keep your practitioner focused

Depending on biases that you are dealing with, you may have to refocus your practitioner. Often, no matter what I go to the doctor about, they only want to discuss weight loss. Considering the absolutely abysmal success rate of weight loss, I practice Health at Every Size. The doctor who tried to prescribe a diet when I had step throat is a great example of this — I was not suffering from fat-induced strep throat so his advice was inappropriate. I fixed this particular situation by asking what the doctor would prescribe to a thin person with strep throat. We decided that antibiotics were, indeed, a more evidence-based approach to strep throat than dieting.

When doctors recommend weight loss for me, I ask them for a study where the majority of people had long-term success at significant weight loss. They can’t provide me with one, because there aren’t any. So I provide them with the evidence basis for a Health at Every Size approach, and ask them to respect my decision, and focus on my health rather than my weight.

For trans people, this can often be extremely difficult. This was the case for Tanya Walker, who had lung cancer and was coughing up blood, but was dealing with an ER doctor who kept asking about her genitals.

Some phrasing you can use to refocus your practitioner:

“I appreciate you telling me about that. I’d still like to use today’s appointment to deal with [thing I came here for] but I’ll set up another appointment to discuss [this new thing]”

When doctor’s recommend weight loss for me, I ask them for a study where the majority of people had long-term success at significant weight loss. They can’t provide me with one, because there aren’t any. So I provide them with the evidence basis for a Health at Every Size approach, and ask them to respect my decision, and focus on my health rather than my weight.

Overcoming bias

Anyone who has been the victim of bias knows that addressing it head on can only make things worse by creating defensiveness that leads to doubling down on bias so, sadly, we have to tread carefully here. Here are some options.

Subtly let them know that you know the game:

  • “I’ve heard that patients of color are often mistakenly prescribed a different pain regimen than other patients, have you heard anything about that?”

Give them cause for concern:

  • “I’m only asking about this repeatedly because I just read about a woman with symptoms like mine whose doctors kept telling her to lose weight, then when she got her cancer diagnosis it was too late to do anything about it.” or
  • “A dear friend of mine ending up having a sue a doctor for malpractice after she said that her symptoms were all in her head but she ended up having serious issues. It was horrible and I definitely don’t want to go down that road. Can we just go ahead and schedule the tests?”

Agree to their treatment at a later date:

  • “I’m willing to talk about dieting after we’ve exhausted the treatments that would be given to a thin person for a sprained ankle.” (Once your ankle is fixed, you can conveniently forget to talk about dieting.) or
  • “I’d like to first try treating this like it would be treated in a man. If that doesn’t work, we can talk about how it might be all in my head. ” (Of course, you absolutely DO NOT ever have to talk about that, this is just a technique to get you treatment now.)

Be ready to educate and to ask for education

Doctors should know more about working appropriately with commonly marginalized people. They should be constantly working on their implicit biases and making sure their approach to pain management isn’t rooted in racism, misogyny, and bigotry in general. But in reality, often they aren’t—and that includes doctors who honestly have good intentions as well as the ones who are just jerks.

That means you might by able to improve the health care you receive by being prepared to educate doctors. I created cards for fat people to use to avoid allowing their doctor’s weight bias to compromise their care. Trans people often have to give a Trans 101 talk to every practitioner from the intake nurse to the ECHO tech just to get proper basic care. Patients with disabilities and chronic illness often have to educate healthcare practitioners about how to work with them.

Consider what the doctor needs to know about working with someone with your needs. Check out support forums with others who share those needs and look for resources and tips for communicating those needs.

It’s also absolutely your right to ask for education. Whether it’s asking why they chose a lower than normal dose of pain medication, or how they ruled out physical causes of pain and declared them psychological (or even how they think diet and exercise will cure strep throat).

Know what you want

If you are in a situation where you know what you want, sometimes a combative and/or lazy appointment can be ended quickly. For example, you may know that you want a test for kidney and liver function, or a prescription for fluconazole for a yeast infection, or an MRI. You might want to check around regarding labs, and find one that will communicate with you directly. I use Quest Diagnostics, they send the results to my doctor, but they also send them to me so that I can do my own research as well.

With your doctor, you can try saying something like:

  • “What if we just get [the tests you want] done, then we’ll have all the information?”
  • “I understand what you are saying, and I’m happy to make another appointment to talk about [the unrelated issue they brought up] but for now, I would just like to get my [prescription refill, tests, etc.]”

There are also ways to get around going to your doctor for diagnostics or prescriptions, though they can be cost-prohibitive. Companies like allow you to talk to a doctor by phone or on your computer (and they take many types of insurance.) They can order medication — they specialize in birth control and PrEP for HIV prevention — as well as refills.

Some drug stores offer basic metabolic testing (blood glucose, blood pressure, etc.) without a prescription. You can also purchase various monitors online.

After your appointment

You have the right to review your chart and, while it can be difficult to impossible to get something removed, you have the right to add notes. So if you feel like the doctor may have left biased notes, you can ask to see your chart and demand that an explanatory note be added. This can be important because notes in your chart can affect future interactions with healthcare providers, as well as access to care in the future.

For example, I’ve had several doctors note that I am a “non-compliant” patient because I wouldn’t accept dieting as a “medical intervention.” Being labeled non-compliant can have serious consequences (one example is that it would be held against me if I ever needed an organ transplant,) so I always add a note that says something like “doctor was unable to provide any evidence to support the long-term efficacy of a weight-loss intervention, I chose a Health at Every Size intervention based on the research of Wei, Matheson, The Cooper Institute et. al.”

HIPPA is the Health Insurance Portability and Accountability Act gives you the right, in the US, to getting copies of your own medical records (with some exceptions) within 30 days of your request. Most physician offices are accustomed to getting this request and will know how to direct you. Note that the information might come in some archaic form, like a CD designed to run on an old version of Windows, that may take some sleuthing or help from a tech-savvy friend to get into a useful format.


Summing it up

Ideally, we would be a team with our healthcare provider. Dr. Paul Haidet, who runs part of a program at Baylor College of Medicine that helps people communicate with their doctors, says that the ideal doctor-patient relationship is like a meeting of two “experts.”

The doctor comes to the meeting with medical expertise. “The patient is entering with contextual knowledge, what these symptoms mean in the broader context of my life, and what kinds of therapies that broader context is going to support.”

Sadly, that’s not always the case. And healthcare practitioners are just like the rest of us—fallible human beings, some of whom are great at their jobs and some of whom are terrible. Some are focused, others distracted.

If we were screwing up our jobs, we would expect to be corrected for the good of the company. That’s all being your own medical advocate is — speaking up for the good of our bodies and our own lives.

Picking the right team, and then working to communicate with them well, is what being your own advocate is all about.

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