For every encounter with a healthcare provider who goes above and beyond, listening intently about our aches and pains, there’s a dismissive doctor who suggests the issue is nothing to worry about; or worse, dismisses it altogether. Encounters like these are the reason why the term “medical gaslighting” has entered the vernacular.
How do you make yourself heard when you’ve been silenced, ignored, or had your concerns diminished? Experts say it’s about learning how to speak so your doctor can really hear you—or finding someone who can do it on your behalf.
Conscious and unconscious bias play a role
Gender bias, racial bias, and ageism are among the prejudices that women, seniors, the LGBTQ community, and people of color face when speaking to their healthcare providers. Women living with chronic pain, for example, are less likely to receive adequate care from doctors compared to men, according to a 2018 study. They are also less likely to have symptoms taken seriously and more likely to have their medical concerns dismissed. For Black patients, it’s a false, but long-standing belief that they have a higher tolerance for pain; as a result, they’re less likely to receive pain medication for injuries. Elderly patients, according to research conducted by Regis College, are more likely to receive less patience and engagement from their doctors. They may also be spoken to as if they are impaired and can’t understand what is being said to them.
Prejudged beliefs and “isms” are stacked against people who need the medical field to work with them, not against them. It’s a trend that has existed for so long, it’s affecting how doctors do their jobs: over 70% of healthcare professionals have a cognitive bias that negatively impacts how they make medical decisions, including making diagnoses. Changing that reality happens when doctors and patients work together, but it’s not an easy, overnight job.
It’s not as simple as just speaking up
“We speak in settings where we feel safe and where we feel valued,” explains Dr. Negin Hajizadeh, a pulmonary and critical care physician at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell. “Meaning, we won’t speak if we are fearful of judgment and negative consequences based on what we say … for some communities, we don’t know that we are expected to speak and that if we don’t, assumptions are made that will hurt us.”
Unfortunately, according to a 2018 study, patients have just 11 seconds to explain the reasons for their visit before they’re interrupted by the doctor. Being rushed to explain a medical concern while fearing not being fully heard dissuades patients from telling doctors what ails them.
For people of color, having 11 seconds to explain their medical issues is lower on their list of concerns.
“There’s a history of silencing Black and brown bodies and voices in medical care,” says Professor Tonya Hegamin, an English instructor at Medgar Evers College in Brooklyn, New York and a long-time medical patient advocate. “So we are, ourselves, fearful. You all have taught us that we are already not welcome.”
It’s a sentiment that’s also shared by people who don’t outwardly look like anything is wrong.
“People with invisible illnesses struggle to get recognized and validated because the ailment cannot be measured easily,” Hajizadeh says. “When their symptoms don’t fit one of our learned medical diagnoses, they jump additional hurdles to be seen and taken seriously.”
Patients have rights
Remembering that it’s your doctor’s job to help you sort through medical issues can give a boost of confidence for patients afraid of hitting a wall with their healthcare providers.
“This doctor actually works for you,” Hegamin explains. “This doctor does not have authority over your body. You have rights if you feel as though the doctor is not listening to you,” referring to what is called the patient’s bill of rights in the U.S. While each state has its own patient bill of rights, the American Hospital Association created an official list for hospitals to follow. A patient’s rights include considerate and respectful care and being entitled to discuss and request information related to specific procedures.
Have a loved one, friend, spouse or caretaker present
Bringing a family member, friend, partner, or caretaker with you to the doctor’s office can help make asking the important questions easier. The presence of a person who cares about your well-being can either give you the confidence to speak up, or you can have the companion ask questions on your behalf.
For patients who can’t rely on a family member to act as a caretaker, organizations like the Patient Advocate Foundation and the National Association of Healthcare Advocacy can help you find one to assist in asking important medical questions. For additional advocacy and support, you can request the help of a medical social worker. Social workers work directly with hospitals and other health care facilities to provide patients with varying levels of advocacy and support.
Do your homework
Just as having a caretaker present can aid in opening channels of communication with a doctor, walking into an appointment armed with knowledge and ready to cut indecisiveness at the knees can also help, says Hajizadeh.
Hegamin understands how important this is on a personal level. Following her type 1 diabetes diagnosis, she educated herself about supports that might benefit her condition, and talked to friends who shared knowledge about how they advocated for themselves in health care settings. This gave her the courage to speak up and ask her doctor for what she wanted—and she was able to obtain a service dog.
“Go into the visit prepared to answer these common questions: what is bothering you? When did it start? What makes it worse? What makes it better?” she says. You should also track your (or your loved one’s symptoms) “to help the doctor get insight into what is happening outside the office and how this has been affected by the treatments over time,” says Hajizadeh.
If you sense a hesitation with your doctor, Hajizadeh suggests addressing it gently, but directly. Depending on the situation, you could say something like, “I know some people probably think that I don’t really have pain because I look so put together, but [here’s what’s going on],” she says.
You should also ask your health care provider direct questions to make sure you understand what the doctor is telling you, and that important points have been addressed. These questions also aid the professional, Hajizadeh says. They can help doctors determine a person’s medical issue, but can also lead to that person’s better understanding of their next steps.