Meghan O’Rourke suffered more than pain when she had a chronic illness, facing sexism from her doctors. When consulting doctors about her various, seemingly unrelated, symptoms—hives, fatigue, and chronic upper respiratory infection—she was asked on one occasion on one occasion if she had boyfriend problems.
Speaking as part of the Park Street Corporation Speaker Series, O’Rourke told students her story of chronic illness on Thursday night.
“Most illness stories have a startling beginning,” she said. “But not mine.”
Instead, O’Rourke went through an array of ongoing conditions that seemed unrelated. While doctors treated her individual symptoms, they never addressed the underlying cause of her issues.
Unfortunately, other doctors doubted that she had an illness at all and thought she was part of the “worried well,” or people who aren’t sick who worry about their health.
She referred to her chronic rashes as a metaphorical braille and said her mission was to learn its meaning.
“I went on a quest for both treatment and recognition,” O’Rourke said.
Eventually, she learned that she had an autoimmune disease. Autoimmunity, which is when the body’s immune system misidentifies a threat and attacks healthy cells, is poorly understood, and lacks a cure.
O’Rourke’s experience is not out of the ordinary for those with a chronic illness. It takes an average of five years and six doctors for a chronic illness sufferer to find a diagnosis. Throughout that process, many doctors doubt that patients—especially women—have an illness at all.
On many doctor’s appointments, O’Rourke’s physicians asked if she was depressed or suffering from any other mental illness.
“We have an irresistible urge to turn illness into a symptom of other things,” O’Rourke said.
Because of many physician’s skepticism, she felt that she had to earn the their trust for them to take her seriously. She underreported the severity of symptoms to make them seem more believable, and would sometimes leave other symptoms out altogether.
“It’s kind of ridiculous that hundreds of thousands of women would simply make up diseases for attention,” she said.
Over 50 million people in the United States have some chronic illness, she explained, and autoimmunity accounts for the majority of chronic illnesses. This accounts for one-sixth of the U.S. population. Additionally, 75 percent of patients with autoimmune diseases are women.
Despite the multitude of sufferers, the U.S. medical system is ill-prepared to treat them. Surgery and other forms of health care that deal with acute injuries or illnesses has progressed tremendously, but there is less understanding of chronic illness.
“We don’t have an autoimmune specialist or center like we have cancer centers,” she said.
This lack of centralization makes it especially difficult for those with autoimmune disorders to find adequate care, and many people end up seeing different specialists and receiving different treatments for each symptom.
According to O’Rourke, the occasional paternalism of physicians stems from standard practices within the medical field. Doctor’s prefer to rely on tests rather than subjective self-assessment, but there are few objective tests for things like pain and chronic fatigue.
“The sick are ordinarily not the best judge of their own needs,” she said, quoting a doctor.
While such an attitude may normally work within the medical field, this compounds the difficulties of those with chronic illness, who rely solely on their subjective experience.
Additionally, autoimmune diseases are on the rise, which makes this problem even more urgent.
“Celiac disease, [an autoimmune response to wheat] has risen four fold since the 1950s,” she said. “Type one diabetes has risen fivefold in the last 40 years and is up 23 percent in the last decade.”
Lupus rates have also increased, and the rate of MS in many European countries has doubled over the last half century. Myriad poorly understood and increasingly common autoimmune diseases inflict an enormous cost on an already overburdened healthcare system.
The annual direct cost of autoimmune diseases is a hundred billion dollars a year in the U.S. alone.
The phenomenon of the increasing amount of autoimmune disorders is limited almost exclusively to the West, and may be an effect of environmental pollution as well as the consumption of processed foods.
Despite this, a majority of Americans cannot even name an autoimmune disease, and many doctors feel inadequately prepared to treat them.
Although more research is necessary to better treat these diseases, O’Rourke claimed that one easily attainable improvement would be more empathetic treatment from physicians. In one study, type one diabetes patients with empathetic doctors performed measurably better than those with unempathetic ones.
She also identified the apathy of family members as a source of difficulty for those with chronic illness. Some of her own family members referred to a relative as someone who “likes to be sick.” After years of suffering, her doctors finally diagnosed her with an autoimmune disorder.
“Pain is always new to the sufferer,” O’Rourke said, quoting Alphonse Daudet, “but it loses its originality to those around them.”
Featured Image by Taylor Perison / Heights Staff