Advocating for yourself

A pink-skinned person stands calf deed in the ocean with arms stretched out, wearing a straw hat, blue shirt, and grey rolled up pants, holding shoes
Me, advocating for myself with the ocean. It went well - this time.
September 30, 2022
Robin Eastman

For many of us, going to the doctor is stressful. This is especially true if you live in a fat body, a Black or Brown body, a disabled body, a trans body, and/or a body assigned female at birth. The more intersections of these you have, the harder it can be to get quality care. 

The reason you go to the doctor is to get an expert's advice on your body. You want to be able to trust that expert to understand you and your needs. You want to be sure that expert isn’t basing their advice on biases and inaccurate data. 

In addition to giving advice and providing care, doctors are often gatekeepers. You do not just need the advice a doctor gives you, but their sign-off to receive care or participate in an activity. There are positives to this - it is good that snake oil salespeople can’t directly sell you dangerous medications without regulations - but it also has a lot of unintended consequences. It puts doctors in an authority role and makes patients a lot more vulnerable. Even doctors who care deeply about the agency of their patients can have difficulty navigating this dynamic.

Given all of this, it’s important to advocate for yourself, but how? 

Choosing a care provider

It can be overwhelming to navigate insurance and look for the right care provider. There is no one right way to do this, especially given limitations from location, insurance, and incomplete information on websites. Answering these questions can help you search:

Take time to prepare

What is the purpose of your visit? Do you need help diagnosing a problem? Are you establishing care with a new doctor? Do you need paperwork done? Do you need medication management? Each of these has different prepwork needed. Make sure you have whatever forms you need. Write out questions you want to ask and take them with you. 

Communicate to your doctor or care professional what the purpose of your visit is and what is important about it for you. It is ok for you to bring the visit back to your purpose if the doctor starts veering off. 

Consider taking an advocate with you

Having someone you trust with you at your appointment can make the whole process less stressful. There will be someone who is not vulnerable who can help you ask questions and make sure you don’t get rushed through a decision. It also shifts the power balance, so you don’t feel “outnumbered” by the authority of the doctor. 

What kind of self-advocate do you want to be?

Take some time in advance to think about what kind of advocacy you want to do for yourself. Do you want to be firm? Understanding? Guiding? Confrontational? There are a lot of ways to advocate. Some of them will feel better to you than others. It may feel better to you to acknowledge that the doctor is doing their best - or it may not. You may want to help educate your doctor, or you may want to focus your time on finding care professionals you don’t have to educate. This will depend on who you are, as well as where you are. People in large cities are more likely to have a wider range of options, for example. Insurance may limit your options. 

If the visit isn’t going well, how do you want to handle that? You may want to remind yourself that it is ok to leave if you don’t feel safe or respected. You may want to tightly focus in on a specific need, such as a referral, med update, or form completion.

Knowing the tone you want to set in your advocacy can help you feel empowered and prepared.

Ask for referrals

Doctors specialize for a reason. If your doctor isn’t the right person to help you with your situation, ask them to connect you to the right person. Sometimes, you can even do this without an appointment by calling or messaging and asking for the referral. For example, general practitioners often aren’t the best person to talk to about muscular-skeletal issues. Physical or Occupational Therapists are much more knowledgeable here. Your doctor might not know much more than telling you to ice and rest, but a PT will know specific exercises and life changes that will reduce or remove your pain.

At the end of the visit

Look back at your purpose. Did you achieve it? If not, bring it back up. Say that you need to complete your purpose or at least figure out next steps so you can get to it. 

You don’t have to agree to anything you aren’t ready for. Doctors often have tight schedules, so they will move quickly and often want to make a decision right away. It’s ok to say you need more time, want to do some research, or want to talk to someone else before you decide. If you do say yes to something, and later realize you weren’t ready or want to make a different decision, it’s ok to reach back out and tell your doctor you need to revisit.

 Let’s talk about weight

Ask some questions of your doctor to start with:

  1. Do you provide affirming care to people of all body sizes?
  2. What have you done to ensure you are able to provide the best healthcare to people who are fat?
  3. Do you know that BMI is not scientifically based? Are you aware of research on anti-fat bias in medicine?
  4. Are you prepared to address all of my health needs without hyper-focusing on my weight?

If your doctor tells you that you need to lose weight before your current symptoms are treated, ask them how they would treat you if you were not fat. Ask them to provide you with that care or to refer you to a different doctor who does not withhold treatment from fat patients. One way of framing it is to say “What happens if I lose the weight and my symptoms don’t improve? What are the next steps? Why wouldn’t we do those steps now?” You can also ask if they are aware of the research on weight loss and that 80-95% of people who try to lose weight regain that weight plus additional weight. Why are they basing their recommendations on a process that has, at best, a 20% success rate? Are they aware of the harm caused by the process of losing and regaining weight? You deserve a doctor that understands and cares about this.

All of your intersections matter

It’s great if you can find a care professional who has lived experience most relevant to your medical concerns, but this isn’t always possible. Unfortunately, there’s research that shows that BIPoC folks, women, trans people, fat people, and disabled people receive worse care. People who fall in multiple of these categories have compounding impacts. If you believe you are not receiving the best care because of how you have been marginalized, unfortunately, you are likely to be right. Look for the people who believe you and want to support you in finding quality care for you, not people who downplay your concerns. It can be especially important to bring an advocate with you if you cannot find a healthcare professional who understands your specific needs and challenges. With your advocate, go over what you are concerned about and what you want them to help you push for. What tone do you want them to take and how will you signal to them that you want them to step back vs. speak up? Set up time with them before and after the visit so you can prep and do a postmortem. 

Partnering with your care provider

If all of this feels a bit adversarial, that’s because it can very much feel that way. The good news is that it isn’t always and that if you find a care provider who is actively working to partner with you, these same strategies work to set up a stronger partnership. Doctors who understand that the best care comes from a strong partnership exist. They will be glad you were clear about your goals. They will welcome your questions and include your advocate. They will be interested in how your intersections affect you and grateful to learn better ways to help you and their other patients. Being an advocate for yourself is something that benefits everyone. 

Self-care in advocacy

If medical visits are stressful for you, do what you can to ease that stress. Plan for good sleep the night before. Make sure you are able to eat before your visit, or that you have your visit as early as possible in the day if you need to fast for tests. Consider mindfulness exercises. If you are bringing an advocate, you can tell them what helps you reduce stress. Remind yourself to be kind to you. 

It shouldn’t be this hard. You should feel supported in your medical care. Acknowledge that. Give yourself permission to feel your feelings about it. 

Be kind to yourself. Be kind to your body. Love you the way that you wish all precious people could be loved. You are precious. 

Self-advocacy is not selfish, it is self-care.

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