Ten Ways to Be a “Bad Patient”
For those of you who follow me on Instagram, you know that I’ve been battling recurring Bacterial Vaginosis for NINETEEN MONTHS. While I have a whole series of posts coming about what’s finally working and what my doctors got wrong, I have been hearing a lot of requests for how I stood up to my doctor to advocate for what MY body was telling me, and what MY body needed.
I want to start this off with the following affirmations:
We should not have to beg for adequate care. Period.
You are the expert on yourself. Doctors know a lot, but they do not know everything, and they certainly do not know YOUR body.
Your body, your choice. You do not have to consent to any test, touch, or even “vital sign” assessment (looking at you, unnecessary weighing).
The often frustrating reality for those of us living in marginalized bodies is that we will likely have to advocate for ourselves in order to receive adequate care. This can be really hard and dysregulating, especially if healthcare settings have been places where we were subjected to trauma and pain. The purpose of this post is to offer you a step-by-step guide to being a self-advocate at the doctor’s office.
Keep a Symptom Diary
The basic information to track:
how and when it started,
what makes it better or worse,
any associated symptoms,
what you’ve already tried to help alleviate symptoms.
For example, if you’re looking to get your migraines treated, keep track of what time you had a migraine, on what day, and the context of the migraine (What did you eat that day? Were you stressed?).
2. Do Your Research
To be clear, I do NOT mean ending up in a WebMD rabbit hole that convinces you that you may have cancer. This will only increase your stress and anxiety, which we KNOW is bad for you and can even exacerbate many symptoms. I’ve found it helpful to search for what I’m dealing with on Reddit (endless gratitude for r/healthyhooha). I’ve gotten helpful suggestions for creative treatments, tests to ask for, or ways to relieve symptoms of what you’re experiencing. You can also try searching for support groups, Instagram accounts, and Facebook or other online communities.
Have an idea of what treatment options exist, if any, and which ones you’re interested in versus which ones are a “hard pass.”
If you find anything promising or helpful, make a note. When presenting this to your doctor, the following phrase can be helpful: “New research suggests X.”
Example: “New research suggests that the use of vaginal probiotics can be supportive in eliminating recurring BV - have you heard anything about this?”
3. Make a Plan
Included in your plan should be the following items:
A list of questions in order of importance (with the highest priority questions being listed first).
Your goals for the appointment (maybe it’s getting a test ordered, a referral to a specialist, or a medication refill)
Relevant test results, especially if you’re seeing a specialist and they may not have access to your chart.
A brief overview of your medical history, including any chronic illnesses, medications you’re taking, when you last had blood work, and any relevant medical issues within your family, especially if it’s your first visit with the provider.
Be sure to also include coping mechanisms and ways to self-regulate in your plan, both before and after your appointment. Going into an appointment anxious and dysregulated can increase the likelihood of you dropping into a stress response (fight, flight, freeze, fawn) and scrapping your plan completely, which can lead to regret and shame later. “Ugh, why DIDN’T I say anything?”
One great way to help with regulation is:
4. Bring Someone with You
This person can help take notes, listen along with you, and offer another perspective for questions. Choose someone who makes you feel safe, supported, and who can effectively communicate on your behalf.
5. Keep a Detailed Record
Remember to take notes or have your companion take them.
Keep notes on your phone, in a notebook, or ask your provider if you can record audio of the visit. By choosing the latter, you can also go back and re-listen to your appointment and see if anything stands out to you later or generates follow-up questions. Be sure to ask for permission before you record.
Review your notes with your provider at the end of the appointment to ensure you fully understand what was discussed and that all of your questions were answered. I recommend closing with the following questions:
When should I see you next?
Are there any treatments or medications I should pick up?
What signs of my condition worsening, and what should I do if that happens?
6. Ask Questions
If you don’t understand something your doctor is telling you, or you don’t agree with something your doctor is saying, tell them. If you feel misunderstood, tell them. Here are some ways to ask for clarification and to follow up:
“I’m worried that we aren’t communicating well. Here’s why I feel that way. What can we do about this?”
“I need to talk with you about _____. I feel like I can’t. Can we talk about this?”
“Can you help me understand _____?”
“Are there other options?”
“Why are these tests/appointments/medications necessary?”
“When will the results of my tests be ready and how do I learn what they are?”
“Do you make video conferencing appointments?”
If you are someone who feels uncomfortable questioning authority, try deferring to the provider’s expertise when asking for more clarity.
For Example: “I’m not a doctor, so I don’t quite understand this, but I’d really like to understand more. Can you tell me where you got that conclusion from?” or “Can you tell me more about your diagnosis or why you chose that treatment plan?”
You can also ask the doctor if they have any research or other materials you can read about your condition or medication.
When prescribed medication, ask your doctor if it has ever been studied in women and whether it has potential side effects/risks for women. If they don’t know, go somewhere else. Similarly, if your doctor suggests a medical test, ask how accurate it is for women. Many standard diagnostic tools were designed only for men.
You can also ask for a “differential diagnosis.” A differential diagnosis is a list of potential conditions that fit your symptoms. If your provider orders a test to rule out any of the potential conditions on that list, you deserve to know why. Inquiring about a differential diagnosis lets your doctor know that you want to hear every potential outcome and options for next steps.
7. Ask for Your Concerns to Be Entered into Your Chart
This can help you get certain medications and specialists covered by insurance later, or support your request for a second (or third) opinion. This also holds your doctor accountable.
What should be documented?
Your symptom diary. “Can you please enter the following information into my chart?”
Your specific concern or complaint. “Can you note in my chart that I am specifically concered about X?.”
If your doctor refuses a test or a course of treatment. “Can you please note it in my chart that you refuse to do X test.”
8. Push Back, if You Need to
If your doctor shows any racial or weight bias, misgenders you, or dismisses your pain, say something. I know that this is a big ask, especially for folks who have experienced stigmatization or been brushed off before. However, your self-advocacy may lead to better outcomes for future patients. This is also a GREAT time for your companion to step in, especially if they are from a population that experiences privilege (looking at you, cis male partners).
Here are a few things you or your advocate can say to a provider if you are experiencing fatphobia, homophobia, transphobia, racism, or other forms of discrimination or if the doctor is minimizing your experience:
I practice weight-neutral health, so I prefer to focus on my health, not my body size.
Actually, my pronouns are…
I’ve read that people of color/women/folks with disabilities tend to get less pain management, and I just want to make sure that’s not happening here.
Can I speak to another doctor about this?
What would you do for a thin/able-bodied/white/AMAB person in this situation?
I feel you’re not taking my concerns seriously.
I understand you’d like to know about my history, but what I’m really concerned about is…
There are caveats to this, of course. For example:
Those with limited access to healthcare providers may only have one or two practitioners or specialists available.
If it may be difficult to get an appointment with a different provider.
If your goal for the appointment is just to get a prescription filled or a specific test (STI screening, for example) and move on.
If pushing back may put you in physical or emotional danger.
In these situations, you may want to let the doctor proceed and not speak up in response to insensitive remarks to get the result you want.
9. Take Your Time
According to a 2021 study, the average primary care provider visit takes about 18 minutes. To make the most of this time, give your nurse a detailed reason for your visit. Not only do they have a direct line of communication to your doctor (and hopefully a relationship of camaraderie and trust), but they may also be able to answer your questions. Don’t be afraid to ask them during intake or after your appointment while you’re checking out.
If you sense that your doctor is in a rush to end the appointment, or their hand is on the door to leave and you have other topics to discuss, you have every right to push back. Try this: “I know you’re busy, but I still have more questions and I would love it if you sat down with me for a few moments more.” Then, recap the appointment: “You’re saying my diagnosis was X and your treatment plan is Y and you’ll be calling in this prescription.” Then, ask about any next steps. You can also take this time to review the list of questions you prepared before the appointment to ensure you addressed all of your concerns.
This is also the perfect time to add that you do NOT need to respond or agree to anything immediately. You can take your time to think about their suggestions and do your own research before agreeing, and you can also ask for your doctor to refer you to a specialist for a second opinion if you feel it would benefit you.
10. Don’t Be Afraid of a Second, or Third, Opinion
When it comes to assessing your body and health, listen to your gut. Doctors should be there to help you. If they aren’t, be willing to seek a second or third opinion and leave a doctor who isn’t working for you. If you wish to stay within the same practice, you can ask if there is another medical professional within the clinic you can see — perhaps one who shares a background and identity with you.
To help guide your search for a new provider, you can use reviews from Zocdoc and Healthgrades. You can also ask friends and people in your community if they would recommend their doctor.
Before making an appointment for a second or third opinion, ask the office staff questions about the provider. Try this: “I’m looking for a new practitioner. I need a doctor who is [weight neutral/anti-racist/sex worker positive/trans positive]. Is there a doctor there who meets that criteria?”
If you live in a state where medical providers can decline to treat patients based on their religious beliefs, ask a new provider about their policy. Use This: “I know in this state, doctors are allowed to bring their religious beliefs into consideration when treating transgender and non-binary people. Is that something that you do? And in what way?” You can remain anonymous or even have a loved one make the call for you if you’re nervous. Or, you can say that you’re calling for a friend!
Sometimes, it can be easier to advocate for a friend than yourself, SO consider your body a friend that deserves your support both in and out of the doctor’s office. By advocating for your body, you are advocating for a friend who has been there with you through it all.
This is your health and your life. You have the right to ask questions and voice potential concerns. Don’t be afraid to ask for what you want or need. You are your own best advocate. I know it’s scary and can feel very isolating. If you need any support or advice on how to best advocate for yourself at the doctor, email me and I’m happy to set up a pep-talk or debrief call with you.
