For some, it can be a dreadful experience.
Waiting for your name to be called. Walking back with a nurse who notes your weight, height, and blood pressure. Getting an annual checkup or going in for follow-up care at the doctor is typically not what most people enjoy, but it’s a necessary part of taking care of your health. For Black Americans, our complex history and relationship with the health care system adds even more stress.
Black women often report dismissal of their symptoms, concerns, and questions. One in three Black Americans have reported experiencing racism within the health care system.
This often leads to Black folks seeking a new provider or delaying a follow-up appointment. But it’s not enough to avoid necessary health care appointments. And even though research shows we need culturally competent health care professionals, sometimes you can’t always get a Black provider.
So that begs the question: what’s the alternative?
Z. Colette Edwards, founder and chief medical officer at pausitive health, an organization focused on menopause, and co-author of Navigating Your Healthcare Journey: Lessons Learned to Get the Care You Need and Deserve, says it’s important to know how to advocate for yourself in health care settings. It’s more than just speaking up and asking questions — it’s about taking control of your health.
“No one is going to care about your health and your health care more than you,” she says.
Here are seven of her top tips on how you can prepare for your next doctor’s visit.
Don’t make assumptions
Visiting the doctor’s office or emergency room can come with lots of mixed emotions. And if you’re feeling sick or in pain, it can be even more difficult to interact with health care providers. But Edwards says it’s important to not make assumptions. Whether that be assumptions that your pain levels will be dismissed or that the health care team will treat you poorly.
Instead, she advises you take people on a case-by-case basis. Meaning, every health care clinician will have a different bedside manner. Just because someone looks like you or shares some other demographic similarity, that doesn’t necessarily mean they will treat you the way you want to be treated.
“Don’t make assumptions based on age or race or name a thing about how a (physician) is going to be,” Edwards says. “They will reveal themselves.”
Prep questions and take notes
Any kind of scheduled doctor’s appointment gives you the opportunity in advance to prepare questions. Experts suggest prepping a short list of questions to ask your doctor, which can help you get the best quality of care. Edwards reminds folks to not be afraid to ask questions. It can be easy to skip the seemingly obvious questions, but in reality, nothing is too obvious when it comes to your health.
As you ask questions, it’s important to jot down notes. This can signal to the health care team that you are serious about your health. If you’re unable to keep track of notes yourself, perhaps having a friend or loved one in the room can help. At the very least, taking notes can leave you with more clarity about your health and what the next steps moving forward are in your health journey.
Here’s a short list of potential questions:
- What kinds of tests can you run to identify why I’m feeling this…?
- What’s the treatment plan you recommend? When would that start?
- How do my pre-existing conditions impact my treatment for…?
- What side effects should I expect from this medication?
- What side effects would require emergency attention?
- Are there certain lifestyle changes I can make to improve my condition?
- Is there a certified nutritionist, covered by my insurance, who can help me with my diet?
- How can I meet with a social worker or patient advocate who can connect me with additional resources?
Bring a loved one
When living with a chronic disease, being newly diagnosed with cancer, or if you struggle with anxiety — bringing a loved one can help you remember what is being said at these oftentimes highly emotional appointments. A loved one can offer support, advocate on your behalf, ask questions, and signal to the providers that you have friends and family who are part of your health journey.
Advocate for yourself like you would for a child
In Edwards more than 30 years as a physician, she has seen parents overwhelmed by their child’s cancer diagnosis put their feelings aside and advocate for their children. “Parents are intimidated, but because it’s their child, they fight for their child,” she says. In the same way, it’s important to advocate for yourself the way you would for your child or any child.
Part of taking charge of your health involves speaking up for yourself or having people alongside you who can advocate for you. It’s important to understand what health care professionals are doing to support your health journey. Take the initiative to become educated about your condition or concerns and be aware of your options.
Ask to record the conversation
Most states will allow you to record a conversation without the consent of the other person. However, it’s always best practice to ask or let your clinician know you will record the conversation. California, Florida, Maryland, Washington and other states are all-party consent states — meaning it’s illegal to record without the other person agreeing.
So, if you can record, this can be a great option to keep track of what a health care provider is telling you. It’s especially helpful if you are meeting with an oncologist, surgeon, or managing a chronic disease that requires you to see a provider more often than not. Why? Because it’s easy to forget what a nurse, doctor, or specialist is telling you when it involves your health and quality of life. Plus, it gives you the option to relisten to sometimes complicated medical jargon.
Make sure everything is documented.
Depending on the type of health care visit, it can be useful to make sure everything is documented. For example, if you’re experiencing pain and you request pain medication, if a physician denies it, be sure it’s documented in your chart. This information can be helpful as it can be a proven track record of what medications or tests you have requested.
“It would be atypical that a doctor would refuse to order a lab,” Edwards says. Except in certain circumstances, she says, for example, the menopause experience. Patients’ hormone levels often fluctuate which can contribute to physicians attributing any concerning symptoms to menopause.
This can lead to misdiagnosis of underlying conditions. So, it can be helpful to request these concerns, symptoms, and refusal of further care to be documented in your chart.
Think about who comes after you
Several years ago, Edwards had an appointment with an endocrinologist, one she had seen in the past. While reviewing her labs, the physician told her everything was fine. As a gastroenterologist herself, she requested additional labs specifically checking her hormone levels. The endocrinologist responded with condescending remarks.
Edwards had a decision to make. Accept the way he was talking to her or speak up.
She chose the latter.
In that moment she realized it wasn’t just about her; it was about all of the people who come after her. Which includes patients who aren’t used to advocating for themselves, those who are feeling ill, or those with no medical background.
“I don’t even know what this would be like for someone who comes in petrified,” she says. “Then I thought, what about the people who come after me.”
In response to her, speaking up, Edwards says the endocrinologist was taken aback. It was clear no one had ever held him accountable in that way before. And later, he apologized to her. It’s unclear whether that made a lasting impact.
But, she says, it’s important to speak up and advocate for yourself.
“People have more power than they think they do,” she says. “If everyone did just a little bit, then the system would get better.”
