When you’re in the vulnerable position of seeking help from a healthcare provider, you really want to enter the situation knowing you’ll be heard, seen and understood. And that’s the goal of your provider too, of course.

But too often, in these situations where a patient is tasked with relaying their symptoms and explaining exactly what feels wrong or worrisome, that’s not the case. In a recent survey conducted by SheKnows looking at the experiences of more than 1500 women, we found that 66 percent of respondents said they struggle to accurately describe their ailment or condition to a provider and 81 percent have reported feeling misunderstood by a medical professional.

And we’ve all been there: Knowing something is wrong yet finding it hard to put to words exactly what it is without resorting to the terminology found during scary late-night google searches or vague descriptions of discomfort. But communication gaps such as this can absolutely put a strain on patient-provider relations, contributing to individuals feeling like they’re being medically gaslit or hopeless about getting treated for their conditions. To get a better understanding of how this happens, the dangers of this communication gap and what patients and providers can do about it, SheKnows asked a few experts to weigh in.

The Dangers of Feeling Misunderstood

Rachel Kaplan, a Licensed Clinical Social Worker and psychotherapist who specializes in working with adults with chronic illnesses, told SheKnows that “while it is very common to feel misunderstood by your doctor, it is also a very isolating and discouraging experience.”

After all, as Kaplan notes, people seeking healthcare are looking for “safety in their relationship with their doctor” — and just going in to the doctor’s office can be anxiety-inducing if you’re worried about getting bad news or have had negative experiences in healthcare before.

Working with both patients and medical teams, Kaplan says she’s found issues on both sides of the dynamic that can contribute to misunderstandings and conflict.

“It is common for a doctor to communicate in a way that is perceived as invalidating, stigmatizing, or minimizing the patient’s experience. This can be due to time constraints and pressured expectations from insurance providers to see a high volume of patients, feelings of burnout, or having limited empathy and insight into the emotional experience of being in the patient role because they simply don’t have the bandwidth to get emotionally invested with each person they care for,” Kaplan says. “I’ve seen many well meaning and wonderful doctors refer patients to therapists for emotional support, but oftentimes doing so in a way that sends the message that whatever symptoms the patient is experiencing is ‘all in their head’ or that their anxiety or stress management is what is causing physical pain. Doctors in high-stress settings or working with terminally-ill patients may suffer from compassion fatigue, or have had to learn to de-personalize and become desensitized to each person’s story and ‘humanness’ because they cannot continue to function in this setting without protecting themselves from all of the emotional pain.”

That said, sometimes those factors can then lead to a patient to feel shameful or stigmatized and more likely to withdraw from the relationship with their doctor — disclosing less information or censoring themselves.

“The patient often then begins to worry about how they portray themselves to their doctors, causing them to hold back their  emotions or minimize how hard things are for fear of being not taken seriously or labeled as emotional, dramatic, or anxious,” Kaplan says. “This engagement in toxic positivity, emphasis on acceptance from doctors, and wanting to be a ‘good’ patient, adds to the imbalance in this power dynamic and perpetuates that the doctor is an authority figure, instead of a collaborative partner in your health journey.”

Time Isn’t on Anyone’s Side

Nancy Mitchell, an RN and contributing writer at Assisted Living told SheKnows that the time constraints of most medical appointments — along with the anxiety-inducing nature of navigating health problems — can be a factor contributing to these sorts of misunderstandings.

“The doctor’s office is notorious for long waiting times yet extremely brief visits. Many patients feel rushed or that they aren’t allowed enough time to get past their nerves and anxieties about the office to properly articulate themselves,” Mitchell says. “A more relaxed setting—one where doctors take the time to value each patient’s care as priority—can make all the difference in patient satisfaction levels and adequate treatment.”

And there’s also the issue of how fast providers are expected to get through each interaction with a patient.

“The problem now is that most care providers fly through patients. Sometimes this is due to overbooked schedules. Other times it’s because there’s a high demand for healthcare yet few practitioners available in their area,” Mitchell adds. “Patient care is more complex than many people presume. So there’s a lot more work to be done internally with our health system to provide the resources that allow doctors themselves to give more of themselves to each person.” 

What Patients & Providers Can Do

Rafael E. Salazar II, MHS, OTR/L, a licensed occupational therapist and author of Better Outcomes: A Guide to Humanizing Healthcare tells SheKnows that there are steps clinicians can take to maintain positive relationships between patients and their providers.

“Clinicians and facilities (clinics, hospitals, etc.) should provide space for the patient to share their narrative experience (their story). This may be done via intake paperwork or during the initial consult or appointment. But clinicians and organizations need to provide space to be the ones not doing the talking and allowing the patient to tell their side of the story,” Salazar says. “This is also where clinicians and organizations can practice the fundamental keys to good communication: active listening, empathy, friendliness, encouragement, and appropriate body language.”

There are also plenty of ways patients can advocate for themselves (and prepare themselves to do that advocating work heading into their appointments too).

“I always encourage patients in my clinic to be assertive (but not forceful) in making sure their needs are known. A lot of times, clinicians don’t intend to overlook certain things. They’re just trying to get through a busy day full of many patients, documentation, and other administrative tasks. So, it’s not that they’re intentionally ignoring the needs of their patients. They’re simply forgetting to ask,” Salazar says. “Often, simply saying something like, ‘I just want to make sure I tell you…’ is enough to alert a clinician that there may be more that they need to listen to and take into consideration. “

Other experts along the way recommended patients take the following actions or incorporate these practices to make space for the most positive interactions with their healthcare providers:

• Don’t be afraid to thoroughly research, screen and vet providers ahead of your appointments.
• Put in writing your symptoms/any specifics you want to remember and write down notes of what your doctor says as needed. A health binder can be incredibly helpful if you have chronic illnesses, multiple health issues or a longer health history to disclose to a new provider.
• Team up with a therapist or a loved one to address your needs, any triggers you might have or any particular challenges you might be anticipating.
• Building on that, know you don’t need to attend an appointment alone! Bring someone you trust who can help you clarify, keep track of the conversation.
• If you feel like you’re not being understood you can pause and say “I’m not sure you’re understanding me and I want to make sure we’re on the same page…” or ask for further clarification.

 

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