In Australia recently, a woman successfully sued a hospital for $2.4 million for a series of misdiagnoses that left her quadriplegic. A London woman was recently misdiagnosed four times before doctors discovered she had cervical cancer. A Canadian woman recently filed a $3.5 million lawsuit claiming she was misdiagnosed and ignored when relaying her symptoms to doctors; she could have died. A 26-year-old woman nearly died after a misdiagnosis of her neurological condition, Guillain-Barré syndrome. What does shame have to do with this? Many women blame themselves for becoming ill and feel ashamed about their symptoms, which I discovered in my latest book research. Many report an accurate diagnosis helps relieve some of that shame. Research shows diagnosis attaches a name to what they’re feeling and validates their symptoms. It signals to the patient and their world that they really are sick. As many as 12 million Americans are misdiagnosed each year. Women are reportedly misdiagnosed more often than men. Diagnosing autoimmune diseases, which affect well over 20 million women in the United States, can be trickier than most. For some of them, symptoms can come and go, and people with the same disease may have different symptoms. Research shows it can take well over four years to receive an accurate diagnosis for an autoimmune disease and many patients see as many as four different doctors. Unfortunately, the difficulties women may face in getting a timely diagnosis can strengthen their belief that their illness was their fault. This delay in diagnosis may also cause doctors to tell women with autoimmune issues, in particular, that their symptoms are all in their heads. They may be prescribed antidepressants which often don’t help. Often when the antidepressants fail to relieve their symptoms, they feel even more ashamed and even more convinced that they are “just whining.” That’s another reason an accurate diagnosis is so crucial: patients have a greater chance that their treatment will be effective, which will further relieve their shame. That’s what happened to Stacey, who was a freshman in college when she began to lose weight without intentionally trying to lose weight. At first, it was just a couple of pounds, then five or six. She reports that she went to the campus health service, and they told her she was just homesick and stressed about college. “I felt like they were labeling me as another hysterical woman,” she said. Finally, she found a doctor who ran the appropriate tests and diagnosed her with Graves’ disease, an autoimmune disorder. “I wasn’t hysterical; I was sick,” she said. For my research, I met with over 40 women with different illnesses, some of which were autoimmune and some weren’t. But so many of them viewed their illness as a personal failure. They said they believed their symptoms were due to their inability to manage their stress and saw their illness as confirmation they were unable to manage their lives successfully. When Beth was in college, for example, she told me how ashamed she felt about her severe menstrual cramps. When her periods first began, she hesitated to call the doctor. “I felt like I had swallowed a live piranha and was being eaten from the inside. But everyone has cramps, so why was I whining so much?” she said. “I was under a lot of stress at the time, and I just assumed my stress was responsible for my severe cramps.” It turned out Beth had endometriosis which makes menstruation extremely painful, and she needed a hysterectomy. She recovered more slowly from the hysterectomy than she expected, and then she said she felt ashamed about her slow recovery. “Everyone has hysterectomies, so why couldn’t I just get over it like everyone else? What’s the matter with me?” Even women who experience problems breastfeeding report feeling ashamed of their difficulties convinced that it reflects their own failure as a mother. Although most of the women I talked with blamed themselves, their reasons were personal and individual. Nevertheless, shame was their common denominator. To paraphrase the late Susan Sontag, women often see their disease as a psychological event, a metaphor for their inability to cope. They’re sure it means they’re not good enough, that something is wrong with them. If only they were stronger or better able to manage their lives, they never would have gotten sick in the first place. One problem with feeling so much shame is that it can actually make things worse for your health; at times, it can be fatal. A classic AARP survey in 2012 found that only half of all women who participated said they would call 911 after experiencing heart attack symptoms. The main reason they reported was they were ashamed for paramedics to see their messy house. But there’s a four-hour window during a heart attack when treatment is most effective. After that, there is a much higher chance of severely damaging heart muscle. Delaying calling for help can be fatal. So why do so many women do this to themselves? Some feelings of shame are a sorry inheritance. As far back as ancient Greece, women’s bodies were believed to be inherently wrong and responsible for all our pathologies. Women’s bodies were thought to be the cause of their moral instability, hysteria, and insatiable sexual appetites. But contemporary reasons may cause women to feel so much shame about their illnesses. While the wellness movement offers valuable information about how to live well and stay healthy, its underlying assumption is that how people choose to live their lives is what determines how healthy or sick they become. It emphasizes that if people just exercise properly, eat correctly, harness their happiness, and excise their toxins, they can live healthily ever after. Of course, illness has so many more complications and factors. There are genetic predispositions to disease, lack of access to health care and information, cultural stigmas, environmental dangers, misinformation on health and behaviors, and of course, the dismissal of symptoms and misdiagnoses, which can include gender bias. Shame has no place in illness or in health. The first step to eradicating shame is to openly speak up about symptoms and concerns and for health care providers to commit to acknowledging and interrogating the needs of every individual thoroughly. There is no shame in transparency. Source
