“She has a really high pain tolerance,” my mother told the emergency room doctor. “Like really high.”
He had just asked me the level of my headache pain. I had told him a 9.
He must have made a face or raised a skeptical eyebrow at my perceived calm, because my mother felt the need to jump in and come to my defense, to attest to the validity of my reported symptoms.
This was why I had brought her, for added support.
I always bring my mother with me to the emergency room and anytime I meet a new doctor. Since my new daily persistent headache began almost five years ago, I’ve felt the need to always have someone in the room with me.
“It makes me feel more secure when I talk about my medical history or symptoms, as though an outside witness is required in order to make my case seem more believable.”
Whoever I bring doesn’t even have to speak — just their presence seems to add legitimacy to my chronic illness.
Sometimes, I even bring someone with me to a doctor I’ve had for years.
I asked my father to come in to the room with me once when I was consulting with my neurologist. I’d begun to sense a growing frustration in my doctor’s attitude toward me, or at least toward my lack of responsiveness to any of his prescribed treatments.
My instinct was that my dad should be there.
“When my neurologist entered the room, the first thing he said to me was, ‘I see you’ve brought your backup.’”
These experiences of mine are telling of a larger pattern among women.
While I’ve had many wonderful doctors who have supported me and advocated on my behalf, it’s hard to ignore the number of times my pain has been dismissed.
And I’m not alone.
Many women find having men with them helps prove their case
Women often feel their health concerns are doubted or ignored by medical professionals, wholly because of their gender. This feeling of gender bias has been proven to be true over and over again.
The Girl Who Cried Pain, an analysis of several studies on gender bias in healthcare, writes that women are “more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.’”
Indeed, this necessity to “prove” their case is reflected in the negative experiences of so many women.
“My pain doctor didn’t take me seriously on my first visit… [so] my husband went with me to my second and third appointments, and it was a very different atmosphere.” – Stephani Wilkes
Take, for instance, Katie, a writer who experiences mobility issues and severe chronic pain stemming from multiple diagnoses.
“Doctors pay more attention when I can say ‘Right?’ and have it confirmed by someone outside of me. It makes them less likely to brush it off as me making a big deal out of nothing, and more likely to assume that the symptom is triggering actual difficulty,” Katie says.
Stephani Wilkes, a writer who uses social media and blogging to advocate for mental health awareness, has had similar experiences.
“I felt like my pain doctor didn’t take me seriously on my first visit. I was so nervous to meet with him, and I’m not sure he believed me,” she tells Healthline. “But my husband went with me to my second and third appointments, and it was a very different atmosphere.”
Research shows women have a lot of reasons to feel like they need backup
So why do women have such mistrust for their doctors’ ability to believe them that they feel the need to have someone else in attendance to validate their experiences?
Maya Dusenbery, author of “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick,”shared in a “Fresh Air” interview that“one of the most disturbing things that I found in my research [was] how many women reported that as they were fighting to get their symptoms taken seriously, [they] just sort of sensed that what they really needed was somebody to testify to their symptoms, to testify to their sanity, and felt that bringing a partner or a father or even a son would be helpful. And then [they] found that it was [helpful], that they were treated differently when there was that man in the room who was corroborating their reports.”
In “Doing Harm,” Dusenbery presents the case that the medical system isn’t working well for women. She reports that women make up the majority of the 100 million Americans who live with chronic pain, as well as the majority of those who have a multitude of chronic illnesses.
And yet, she writes that “women wait sixty-five minutes to men’s forty-nine before getting treated for abdominal pain in the emergency room… Young women are seven times more likely to be sent home from the hospital in the middle of having a heart attack… And they experience diagnostic delays in comparison to men for nearly everything, from brain tumors to rare genetic disorders.”
This is due in part to the fact that the medical profession tends to be a “male-model system,” where the symptoms considered “typical” are often those experienced most predominantly by men.
As women often present differently, their symptoms are easily overlooked.
However, there also seems to exist an inherent bias toward women within medicine.
Dusenbery interviewed Dr. Vicki Ratner, founder and president emeritus of the Interstitial Cystitis Association, who explained: “It’s very difficult for a woman to present in a doctor’s office. Because if she’s stoic… then the doctor’s going to think ‘Oh, there’s nothing really wrong with her.’ And if she gets very emotional, he’s going to blame it on, ‘Oh, she’s a psychological mess.’”
No right way for women to act when they’re in pain
I’ve experienced both ends of this spectrum.
From the skeptical emergency room doctor who wasn’t sure he could believe my 9 out of 10 on the pain scale because I was trying to keep myself calm to the doctor who visibly shut down while handing me a tissue to blot my tears of frustration, it’s hard for me to know how to act.
Indeed, this bias makes it difficult for so many women to feel heard and believed.
“My mother once told me, ‘They don’t believe you because you just seem like you have it too together.’”
How many women trying to do everything they can to keep themselves and their lives together have had the same issue?
So, what’s the answer for women like Katie, Stephani, and me? For all of us who have been hurt by skepticism and bias, who feel like we need to have our symptoms and experiences validated in order to move forward with our medical care?
Dusenbery ends her book with a simple solution: “Some of the changes needed are big systemic ones… but there is one that is simple and can be accomplished tomorrow: Listen to women. Trust us when we say we’re sick.”
If doctors can do that, maybe we won’t feel the need to bring people along with us.
Maybe we’ll feel more trust and support in the medical care we’re receiving. Until then, my parents will be by my side.
Stephanie Harper is a writer of fiction, nonfiction, and poetry currently living with chronic illness. She loves traveling, adding to her large book collection, and dog-sitting. She currently lives in Colorado. See more of her writing her at www.stephanie-harper.com.