Hysteria, medical mysteries and bias: sometimes university helps with life

What do you do when you develop low-grade fevers, swelling, enlarged lymph nodes and a host of other symptoms, and all your doctors can do is shrug their shoulders and say they can't help you?

I saw my doctor at the first signs of illness, but despite fainting, a trip via ambulance to the emergency room, repeat visits with my family doctor, specialists and many blood draws (I lost count after eight), I remained sick and mostly undiagnosed.

Once it seemed clear that I wasn't having a heart attack, even the emergency room's approach was to have me sit in the waiting room for hours. Finally the ER doctor admitted he didn't know what was wrong. He sent me home.  

It seemed the doctors saw me as a middle-aged, hysterical, crazy hypochondriac. 

Hysteria is an ancient term originating from the word uterus or womb. It's been used to describe all sorts of women's conditions. It culminated in an actual medical diagnosis, accompanied by treatment aimed at dispelling "emotional excess" through a variety of strange and sometimes medicalized sexual treatments.

Psychological ailments

Some medical professionals thought hysteria was a way psychological ailments expressed themselves through physically visible health issues, such as fainting, shortness of breath, anxiety and fatigue. Sometimes the cure involved tonics or elixirs that often contained laudanum or alcohol.

In the mid-1990s, I took an upper-level Ivy League university seminar with Prof. Mary Jacobus. When we discussed feminist literary theory and criticism and 19th-century definitions of terms such as hysteria, I remember thinking, "This is ridiculous. Thank goodness we don't face these crazy things anymore."

Today, history and a somewhat better grasp of medicine enable us to see that women who went to those predominantly male doctors for treatment felt desperate because they actually were physically or mentally ill. Terrible discomfort causes anxiety, fatigue, depression and a whole host of other issues.

Over time, women's health has improved enormously. Now we know that all sorts of real health issues — migraines, cancers, hormonal imbalances and more — could have forced women to seek medical treatment.

Though there have been vast improvements, women's issues remain problematic. For example, women's health research lags far behind men's health research, and there is still an enormous wage gap between men and women.

• Women's period seen as barrier to medical research
• Gender wage gap adding to income inequality, Oxfam says in new report

Health care remains another unequal frontier. I was reminded of this daily over a six-month period when I became ill. I remembered hysteria from my undergraduate seminar. Suddenly, my liberal arts education was useful to me in a whole new way.

As the primary caregiver for my twin kindergarteners, my first responsibility was their well-being. Despite ongoing fevers, I wasn't as aggressive about my health as I could have been. I remember seeing Prof. Jacobus's daughter in the seminar room at Cornell University, quietly colouring. Maybe there was no school or she was sick — but the professor also struggled with child care.

U.S. diagnosis

Finally, a physiotherapist who specialized in lymph issues suggested what might be wrong. She suggested a naturopath, who seemed far more certain about which tests I needed done — outside of the provincial health-care system. I got my answer $1,300 US later.

According to the U.S. Centers for Disease Control guidelines, I had chronic Lyme disease. A few hours after I got that lab report, a doctor at a walk-in clinic handed me a prescription for several months of antibiotics.

My relief was enormous. When the doctor said she hoped the prescription relieved my suffering, it made all the difference.

I'm still in the early days on the antibiotics, but I felt hope again after getting a real evaluation, diagnosis and medicine for treating the problem. Even if my case is more complicated than just Lyme, the antibiotics likely could do little harm.

I asked no fewer than four doctors if I might have Lyme. All of them dismissed me immediately. Despite a recent trip to the southern U.S. and lots of time outside in Manitoba, both places where ticks that carry Lyme are prevalent, none of the doctors were willing to explore that further. 

Lyme disease is still poorly understood. The tests used for diagnosing it aren't great, either. However, the U.S. has many hundreds of thousands of cases a year. This isn't an exotic ailment anymore.

'Women's' concerns

We study historical trends, cultural theory and even medical changes because they're interesting intellectual pursuits. However, that Cornell class taught me a good deal more. After stints at Oxford and Cornell, Prof. Jacobus left Ithaca to become a professor at Cambridge in the U.K. Despite a top-notch academic career, she too struggled with child care issues — "women's" concerns that haven't changed as much as I'd hoped in that seminar.  

Hysteria is no longer a valid medical diagnosis. However, it's good that I learned about it from such a bright academic. I recognized it when I went to the doctor, asked what was wrong and felt as though I'd been dismissed — and even mansplained, once or twice — with no solution in sight. 

Recent research has indicated that the gender of your doctor may affect whether you leave the hospital alive. Women may practice medicine differently. They're also societally trained to listen more carefully.

• Patients treated by female doctors more likely to leave hospital alive: Harvard study

It's all too easy to decide that a patient with difficult or strange symptoms is not ill but just hysterical. Resolving a medical mystery may be harder intellectual work than resorting to bias. It's the easy way out.

My English class in feminist literary criticism taught me analytical skills, but its historical lessons also proved useful. Persistent, bright women, whether in classrooms or literature, overcame a lot to be healthy and meaningful contributors to society. While sick, I struggled to manage child care and to work productively.

Thanks to one university seminar, I remembered and challenged that silent diagnosis of hysterical hypochondria. I problem-solved by working outside the system. One expensive lab test proved me sane indeed.

Joanne Seiff is a freelance writer, knitwear designer and educator who lives in Winnipeg.