Advocating for Your Healthcare Needs

Advocating for our healthcare needs in a medical system that is rooted in patriarchy, capitalism and white supremacy is challenging and harmful for many of us, and it’s especially challenging for folks living in the margins. In the United States, Black women are more likely to die in childbirth, in part because of the belief that Black people don’t feel pain “the same way.” The trans community struggles to find the gender affirming care they deserve, with many states passing laws banning trans healthcare and allowing for discrimination and bigotry in medicine. While this blog focuses on helping fat people advocate for their healthcare needs, these recommendations will be useful in many scenarios.

Healthcare is the second most common place people experience weight stigma:

1 out of 3 physicians report responding negatively to higher weight patients

31% of nurses say they prefer not to provide care for fat people

And eating disorder treatment professionals are some of the worst when it comes to weight stigma and anti-fat bias. Over her career, Rebecca Puhl has surveyed a large variety of healthcare professionals and has never observed an attrition rate (29%) in any other group.  “The largest attrition occurred when the explicit measures of weight bias were presented to participants, and then when participants were queried about their attitudes toward fat patients.” In simpler terms, ED professionals closed out of the survey early and refused to finish it because they got too uncomfortable when confronted with their own biases against fat people.

Fat people avoid seeking care because of their experiences with weight-biased medicine. They are often offered weight loss advice to treat a whole host of concerns instead of having their presenting concern addressed. They are denied access to life saving medical treatments “unless they lose weight first”. This form of gatekeeping can prompt people to go to extremes to meet weight requirements for joint replacement or gender affirming surgeries, putting them at risk of postsurgical complications due to malnutrition. It also increases the likelihood of weight cycling (yo-yo dieting), which has been linked to increased all cause mortality and to increased mortality from cardiovascular disease independent of BMI and actual health markers.

Without a critical analysis of the dominant weight paradigm (the ways we’ve been socialized and conditioned to think about food, bodies, weight and health), health care providers make judgments and assumptions about “the problem” and don’t lead with curiosity. They show up in authoritative ways, talking at us instead of with us about our healthcare decisions.

You should be the center of your care. This is your body. And we want to share some things with you that could help you better advocate for your needs, and the needs of others around you.

1. Create a Health Advocacy Plan. Our beloved colleague and dear friend Shilo George has created a fabulous template as part of her Body Sovereignty Project to help you create a document to improve communication with your providers. The DIY template includes your identities, preferred terminology, how your providers can best help you with your health goals, your talents, skills, and resources, the other practitioners you see (i.e. massage therapist, personal trainer, etc.), your support people (i.e. BFF, dog), and your current health and wellness goals. Shilo hands this to the front desk at the first visit with any provider she sees and requests that they read it before the appointment. When they begin, she asks if they’ve read it and if they’ve not, she asks them to please read it now.

2. Take an advocate with you. Inviting someone you trust to go with you to a medical appointment can help you advocate for your needs, speak up when you get overwhelmed or activated, and reflect on the visit with you so you don’t gaslight yourself. There are also people within the HAES community whom you can hire to do medical advocacy.

3. Remember your rights. You have the right to refuse any medical treatment, including being weighed. There are very few circumstances where a weight is medically necessary, and there are far better ways to assess someone’s health and well-being. Even if you don’t have a personal problem with being weighed, refusing to step on the scale as an act of solidarity can help normalize this resistance, prompting clinics to change their medical policies and rooming procedures.

4. Make sure they are using the right size blood pressure cuff when taking your blood pressure. A recent study found good solid evidence that a “conventional size cuff leads to average errors in systolic readings of 3.5mm Hg for people needing a smaller cuff, 4.8mm Hg for people needing a large cuff, and 19.5 mm Hg for people needing the next larger cuff.” Accurate readings lead to better treatment outcomes.

5. Ask for documentation. When you are advocating for medical testing or other forms of care and a provider is refusing or denying access, ask them to document your request and their denial in your medical record. Sadly, this is sometimes how we get the testing we need, because they don’t want to find out in the future that they’ve made a mistake or offered biased healthcare. So this way, if something does come up in the future, you have documentation in your chart of having asked for it in the past and being denied.

6. Ask what they would recommend to a smaller bodied person presenting with the same symptoms, complaints or medical condition. This is a good strategy to use when the only treatment plan the provider is offering is weight loss. Here’s an example:  “Thin people also have this condition (knee pain, sleep apnea, diabetes, etc.). What do you recommend for a smaller bodied person with _____?” For knee pain, the provider could recommend massage, physical therapy, medication to reduce inflammation, icing at night, etc.

7. Show me the data. When the provider wants to keep putting weight loss on the table, ask for the evidence based weight loss program with a minimum of five year outcome data showing maintenance of weight loss. Tell them you’ll be waiting for their email. If you have to or feel compelled, share the research in this article that shows yo-yo dieting (weight cycling) is linked to increased all cause mortality and to increased mortality from cardiovascular disease independent of BMI and actual health markers.

We acknowledge that we are being tasked with advocating for our needs (or our loved ones’ needs) in a system that not only judges people for being fat, but is also deeply shaped by other forms of oppression. We want you to have ways to push back, and we also recognize that this kind of advocacy will be impacted by race, gender,  size and class positionality. Not all people will be believed and trusted when they advocate for their needs or disagree with recommendations from a provider, and the potential consequences for pushing back could be severe or life-altering.

We wanted you to know about a webinar Ragen Chastain and Shelby Gordon, who is Body Trust Certified, are holding on September 27th called Navigating Weight Stigma at the Doctor’s Office. With an intersectional lens, they will discuss the research around weight and health, and tips, tricks, and strategies for getting competent, evidence-based care from healthcare practitioners. Read more and register here.

Lastly, there are amazing people in our community creating resources and putting out newsletters to help folks develop a critical analysis of the dominant weight paradigm’s influence on healthcare systems and handouts to offer weight-neutral treatment plans. Here are a few of our favorites:

HAES health sheets

Weight Inclusive Medical Nutrition Therapy handouts

Ragen Chastain’s Weight & Healthcare Newsletter

Dalia Kinsey’s Body Liberation for All Newsletter