I recently had a visit with my primary care doctor to discuss some new symptoms I’d been experiencing, related to systemic muscle weakness in my arms and legs. I’ve had new daily persistent headache for several years, a headache that basically never goes away. On top of that, I have a long list of additional symptoms, including pain all over my body and extreme fatigue, with no diagnosis.
At my appointment, I started describing my symptoms with my usual preamble of “I know I’m overweight and I have some deconditioning and I am sorry, but this is different.” At the end of my appointment, after we agreed that there was cause for some concern and discussed next steps, my doctor said, “You apologize too much.”
I laughed and said, “I know.” The habit comes from many experiences of being dismissed by healthcare professionals.
I feel like I have to be preemptively apologetic—defensive even—to be taken seriously by doctors.
It’s not totally unfounded. After all, there was the ER doctor who gave me a shot of morphine for my “little headache” when I was in so much pain that I writhed in my hospital bed. Or another doctor who called me “dramatic” when I was coughing up a lung because of bronchitis, which resulted from a sinus infection made worse by my yet undiagnosed asthma and immunodeficiency.
Then, there was the time that my dad came in to my hospital room to report that he had heard two doctors discussing my abdominal pain in the hallway. They had determined that, because I had been in the ER for my headache before, there must not be anything they could do. They implied that I was there for painkillers, even though I had vehemently refused them when offered because narcotics make my headache worse.
Now, my doctor and I are investigating gastroparesis, a sort of partial paralysis of my stomach muscles.
He was right, of course. After all, he’d been my doctor for 15 years, maybe longer. He’d walked alongside me through all of this. The headache disorder, new symptom after new symptom. He’d referred me to numerous specialists. He had the complete picture. I had to make others see the complexity of my situation, the challenges I faced, the challenges I will continue to face. I had to make them see me.
It turns out that this is a common problem for many women with chronic illness or complex diagnoses.
Just visit the chronic illness community on Twitter, and you’ll see story after story of women’s pain being discredited or devalued. You’ll see a medical system completely out of touch with female suffering.
When I reached out to some women about this story, I was flooded with responses. One woman told me that she always tried to do ample research before her doctor’s visits so that she was well-informed about her illness. But she’d found, “Everything I try to do to convey credibility works with some doctors, and completely backfires with others.”
Another woman explained that she had started self-medicating after “seeing doctor after doctor, neither [of whom] understood nor believed” her plight. She went on to say that she has “largely given up on doctors because the repeated experiences were so depressing.”
It turns out that what I’ve experienced, what these women have experienced, is a kind of healthcare epidemic. A 2001 study called “The Girl Who Cried Pain” found that even though women report pain more often and at a higher level and longer duration, men are continually treated for pain more often and more aggressively. I asked Dr. Urszula Klich, the president of the Southeast Biofeedback and Clinical Neuroscience Association, about this. She agreed that it is a pervasive problem, explaining that, “By the time people come to see me, they’ve often gone to doctor after doctor, and commonly feel like they have been discarded and that it’s all in their head.”
Dr. Klich even told me that some patients unknowingly contribute to this epidemic by choosing to forgo their pain medications before appointments, hoping the doctor will “see how bad it is.” In this instance, women are afraid that relieving their pain will “distract the doctor from continuing to look for a cause and cure.”
I asked her why some doctors struggle to grasp women’s pain. In her opinion, it might be a lack of understanding about how pain works or manifests differently in every person. While talking about her own practice, she explained, “We take each and every person’s report seriously. What matters is their report and that pain is subjective. End of story.”
It turns out that perhaps the best way we can advocate for ourselves is to continue to share our stories.
The more visible the chronic illness community becomes, the more voices there are to champion for our cause, and the more medical professionals will have to learn how to listen.