The Complete Guide to Becoming Your Own Medical Advocate

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

Ragen Chastain
Aug 27, 2018 · 20 min read
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

Maximize your time with the practitioner

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

“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

The Dream Appointment

Diverse and comfortable office

Friendly and accepting staff

Attentive and informed practitioners

Create your own list

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

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

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

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

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

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?

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?

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 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

Just say no

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

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

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

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

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

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

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

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.

Better Humans

Better Humans is a collection of the world's most trustworthy writing on human potential and self improvement by coaches, academics, and aggressive self-experimenters. Articles are based on deep personal experience, science, and research. No fluff, book reports, or listicles.

Thanks to Terrie Schweitzer

Ragen Chastain

Written by

Speaker, writer, Certified Health Coach, marathoner, fathlete. Thought leader in body image, Health at Every Size, & corporate wellness.

Better Humans

Better Humans is a collection of the world's most trustworthy writing on human potential and self improvement by coaches, academics, and aggressive self-experimenters. Articles are based on deep personal experience, science, and research. No fluff, book reports, or listicles.

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