What Physicians Need to Realize About Sexism in the Chronic Illness Medical Community

I was 13 years old when I first started feeling weird. Unexplained fevers, joint pain, and abdominal pain quickly became part of daily life; normal, even. My parents recognized that this was not the default, and so began an extended period of visits to the doctor. For the next two or so years, I visited a variety of specialists, never leaving with any answers and almost always leaving more confused than before. Doctors chalked my symptoms up to growing pains — and heavily implied that I was imagining or exaggerating what I was legitimately feeling.

By the time I was 16, I barely mentioned my symptoms when seeing doctors. No one seemed to be willing to dig any deeper, and I started telling myself that this was just how things would be for me; this was just how my body, my mind, or both were. And so, as my symptoms got progressively worse, I stayed silent, fearing ridicule and invalidation. It was only when, in March of 2015, I was suddenly unable to walk or even speak because of the extreme pain I was feeling that I was finally hospitalized, and, after a month’s worth of tests and further doctor’s visits, I was diagnosed with severe Crohn’s disease. My immune system was unbelievably fragile, and I had lost so much blood that I was also severely anemic. The symptoms I had been reporting and feeling from five years before had proved their legitimacy, and I was now facing a lifelong illness and fearing irreversible damage to my body.

I am most certainly not the only chronic illness patient who has experienced a situation like this. There are people worldwide who experience difficulty obtaining a diagnosis, often because chronic illness symptoms are so misleading. Yet, as I began to reach out into the chronic illness community, I came to see a common thread with young, female patients reporting doctors’ lack of interest in symptoms, including pain. I realized that my gender may have played a large role in the disregard of my illness.

In fact, in 2014 the National Pain Report reported that 90 percent of the women with chronic pain they surveyed feel that the health care system discriminates against them. Twenty-four percent said the healthcare system (doctors, pharmacists, insurers, etc.) “usually or always” discriminates against female patients, 67 percent said “sometimes” and only 9 percent said there was no discrimination.

“But everyone has to deal with medical situations like that at some point in their lives!” a patient might complain. Maybe it’s true — who hasn’t waited an endless time in the emergency room, or been given an indulgent smile when reporting pain as a seven, when the nurse seems to think it’s a four? And yet, research suggests women experience these circumstances more frequently than men. A 2008 study found that women were 13 to 25 percent less likely than men to receive high-strength opioid medication, and waited an average of 16 minutes longer to receive pain relief than men.

At my gastroenterologist’s clinic, I am with one of the best in the country — a man who is published in a number of medical journals and who continues to lead groundbreaking research for Crohn’s disease, working with the esteemed Mayo Clinic in Minnesota. And yet, whenever I go, complaining of pain, anxiety, and unresolved symptoms, I deal with unsympathetic nurses, slow-acting physician’s assistants, and a doctor who is rarely present, even for my exams. In short, I am by no means taken seriously at this point. Even with a diagnosis and a treatment plan, I don’t feel like I am treated as an adult patient; more often than not, I leave my doctor’s appointments and infusions feeling like a silly little girl — the same one that I felt like at age 13 when doctors told me that the mysterious high fevers and sharp abdominal pain were most likely “growing symptoms.” 

And I don’t think I’m the only one feeling this way. According to a study conducted by the Yale School of Public Health about how women respond to early symptoms of heart attacks, the main consensus was that younger women may ignore or belittle their symptoms and be less proactive in seeking out care, out of concerns about stigma, judgment and initiating a “false alarm.”

What can I do as a physician? you may be wondering. Perhaps you may be defensive — and there are grounds for that as well. After all, I believe, as I’m sure you do as well, that physicians work extraordinarily hard for their patients, and care deeply about their well-being, happiness, and (relative) health. Over the past year of my treatment, I have encountered doctors like this as well. It is extremely comforting to be in the hands of a physician who truly cares. But based on my experience, I do not believe that this is the default for chronically ill young women, and until it is, I believe that we should continue to remind physicians of that.

Physicians are not the only people working with patients. There are nurses, technicians, and receptionists who also play a huge role in making the patient feel validated. I believe the first thing the whole medical community must do is listen. I firmly believe seminars, lectures, skits, and role-playing methods could all help physicians and other workers in the medical field learn how to identify and get rid of internalized, perhaps unintentional sexism; without all that, however, a change, even a revolution, can still be implemented simply by listening to female patients and taking the symptoms reported as seriously and urgently as the patients themselves report them. Clearer and more open, honest communication between medical professionals and patients is crucial to making young female patients more mentally and physically comfortable in their physician’s clinic, in the emergency room, or in a long-term hospital bed.

Chronically ill young women are not looking for something to be angry about, or seeking empty reasons to find a new doctor. However, we are tired. We are tired of picking needless fights, suffering needless stress, and being in needless pain for rights we should not be denied simply for our gender. We’re tired of being told we’re imagining things, or that we’re taking our bodies too seriously. I treasure my body, and so do the other millions of chronically ill young women around the world. We take our minds and bodies seriously because others do not. I know many chronically ill young women who, due to their negative experiences with doctors, have pledged to become doctors themselves so they can provide a better experience for sick young girls.

We are dedicated to making a difference, but it shouldn’t start with us. Our doctors and other medical caretakers need to notice the dedication and determination we have when it comes to our health. They need to take us seriously, they need to treat us with compassion and empathy. Rather than belittling our feelings and minimizing our symptoms, they can be inspired by our strength and work to give us a less discriminatory, happier, more stable experience dedicated to keeping us the healthy human beings we deserve to be.