I’m going to dip into a bit of auto-ethnography in this post, but I’ll pull in some outside sources too. Bear with me! Recently, I had a health problem diagnosed that had been overlooked or dismissed for a very long time:
For decades I’ve been clumsy, awkward, prone to walking into door jambs and falling down stairs, resulting in broken bones more than once. After one of these incidents which resulted in major hip pain when I was in my mid-20s, I went to my primary care physician for treatment. She told me I probably strained my hip flexor. Heat, ice, rest, and it could take a while to heal. I moved a number of times after that, switching doctors, and as the pain continued I would mention it. I was told things such as, “injuries like that can linger”, “if you lose some weight it will feel better”, and sometimes just got a cursory nod.
My pain got worse and with it, my limp and difficulty standing, walking, and climbing stairs. In my mid-30s, a new primary care physician finally deemed my complaint worthy of an x-ray. Two quick images were taken. “Looks like a little arthritis,” she told me dismissively. I felt like a wimp, overreacting to a “little” problem, and after a decade of trying to explain the pain I was in – which was constant and ranged from uncomfortable to excruciating, depending on how much I used my leg – I stopped talking to doctors about it. My friends and family got used to me limping along slowly and I waved off comments with “I’ve got a bad hip” or “It’s just a little arthritis.” I pushed myself to do as much as I could despite the pain, but when I opted out of an activity because I knew it would hurt, I felt judged by the people around me and internalized a very negative image of myself.
In the past year it has gotten dramatically worse. Trying to keep up with the pace of walking traffic across campus felt like a burning poker inserted in my joint. I haven’t been able to climb stairs without pulling myself up by the railing. I can’t sleep through the night. Because of being dismissed by doctors for so many years, I was deeply ashamed of my inability to function normally. Every time I took the elevator instead of stairs, I was filled with self-loathing for being such a lazy, overreacting weakling. Meanwhile, I swallowed ibuprofen and acetaminophen like breath mints at a garlic festival.
Finally, at the end of a check-up with my primary care physician, I tried to express how much my hip hurt and how much mobility I had lost. He sent me for x-rays in which my hip was in an open, frog leg position, which clearly showed the problem: I have hip dysplasia. It’s congenital and I’ve had it all my life. In fact, my younger sibling wore leg braces as a toddler for what was probably the same condition. When I asked my mother about it, she said, “You always did walk funny.”
My immediate response to this bad news was to burst into tears of joy. The pain isn’t in my head, I’m not overreacting. I felt vindicated, plus there is now a possibility that I can get proper treatment and some relief. Hopefully, all the self-descriptors I’ve internalized — lazy, clumsy, stubborn, weak, complaining, slow — can start to fade because of the discovery that the head of my femur doesn’t fit into my hip socket and never has.
The response I had is one I’ve seen time and time again in online forums for various conditions — not only for more controversial diagnoses like chronic fatigue syndrome, attention deficit disorder, fibromyalgia, etc, but also for many that can’t be diagnosed or confirmed by visual or manual examination or a basic blood test. I’m a relatively assertive person, educated and comfortable with medical terminology, yet I’ve had doctors dismiss my hip pain, medication side effects, and even cancer symptoms. It must be worse for others. What is taking place? Why is there a disconnect between what the patient is experiencing and what the doctor acts upon?
In Reporting Symptoms, Don’t Patients Know Best? is an article that appeared in the New York Times three years ago. It summarizes a study done by an oncologist who observed that patients reported side effects from chemotherapy at a much higher rate than their doctors and nurses. He found a number of factors from both groups that contributed to this. Doctors downgrade the symptoms, thinking that they know better or making internal comparisons to other patients. Patients don’t always tell the complete story, either. They may forget, be distracted, be confused, be embarrassed, not understand their symptoms correctly, or not have an opportunity to share what they are experiencing.
Time is an issue, as many of us get a brief glimpse of a physician as she rushes through, spending most of our medical appointment time with nurses and technicians. Newsweek had a short article on this last year, Why Your Doctor Will See You – If You’re Quick. Even with my primary care physician, who has known me and my family for a few years, I had to rush in my questions at the end of the exam. I was there for a physical and nobody asked, “Are you having any problems today?” or gave me a pause in which to offer that information. I had written my concerns on a registration form, but it became clear that nobody had read it.
A Google search for “doctor doesn’t take me seriously” brings up desperate questions from people suffering from conditions ranging from lupus to PCOS to mental illnesses and beyond. Some pages like this one have well considered, intelligent advice about how to log and describe symptoms and effectively communicate them. Time is an issue again: not everyone can concisely speak about personal, often troubling symptoms. This piece from NPR suggests that the average patient only speaks 12 to 15 seconds before he is interrupted by his physician. That’s not much time to relate important details of personal experience. In many of the online pleas for help a theme is hinted at: the patient’s struggle with how to perform his symptoms, not because he wants to exaggerate them but because he’s trying to find the level that meets the doctor’s expectations and gets his attention.
The relationship between physician and patient is too important for communication to be so hard. I’m glad I finally was heard; I started physical therapy today and things are looking up.