Telling Their Story: Women In Pain Survey

  • Eighty percent of women with chronic pain believe they have been discriminated against in the healthcare system. Eighty-four percent feel that doctors treat them differently because they’re women. Sixty-five percent feel that them being a woman caused doctors take their pain less seriously.

     

    These are the results of an online survey of 2400 women who live with chronic pain. The survey was conducted in a partnership between the National Pain Report and For Grace, a nonprofit organization dedicated to improving care and wellness for women in pain. I recently spoke to Cynthia Toussaint, founder of For Grace about the survey results.

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    “I felt validated for myself and other women in pain,” Cynthia said. “What we’ve been saying for a long time has been quantified.”

     

    The survey included room for additional comments, allowing women to share their experience and they did, in thousands of comments. One question in particular about what doctors have said to women in pain gathered over 700 comments alone. These comments reflected women’s experience of not being taken seriously. They told stories of doctors dismissing their pain because of their weight, age, lack of sufficient religious faith, or whether they had put on makeup. Cynthia shared her own story, saying “when doctors used to flirt with me, I would come home and cry to my mother. She told me not to wear makeup to those appointments.”

     

    Despite the many stories of such encounters with doctors, “I was really happy to see that a lot of women said it took them a long time, but they found really good doctors,” Cynthia said.

     

    Surprising Responses

    Several themes in the survey surprised Cynthia. One was the prevalence of women using opioids to treat their pain. In fact, 60 percent of the women who responded to the survey indicated they took opioids. Almost 50 percent believed that doctors were more hesitant to prescribe opioids to women.

     

    Cynthia stated that biology and hormones form the basis for a different experience of pain, saying “women have lower pain thresholds, testosterone is a form of painkiller.” On the other hand, “men in pain are much more likely to be believed,” she continued. Cynthia also commented that opioid-induced constipation is an emerging health issue. In fact, over two thirds of the women who took narcotic painkillers reported experiencing constipation.

     

    Women also used alternative treatments to treat the pain. The two top methods were vitamins and exercise. “That was a surprise I was happy to see,” Cynthia said, “I’m always telling women in pain to move more.”

     

    Another surprising theme related to the supportiveness of the women’s partners. Eighty-six percent of the women said that their husbands, boyfriends, or partners were always or usually supportive. “That was a surprise,” Cynthia said. “I usually hear from women saying that their husbands don’t believe them or think they’re crazy.” She told a story of speaking to a woman at the Women In Pain Conference this year, who explained that her husband believed she was crazy, rather than in pain. When the woman told him that were 150 women at the conference, “the husband said it was collective psychosis.”

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    The Link to Childhood Trauma

    The survey also looked at the connection between adult pain and childhood trauma. “Seven out of ten women with adult pain reported having childhood trauma, but half the women surveyed did not believe that their pain was a result of emotional trauma,” Cynthia said.

     

    She also explained that many psychologists say that childhood trauma, such as emotional or sexual abuse, bullying, or the death of a parent, can in fact rewire the brain and central nervous system, leading to a change in how the person perceives physical symptoms. Cynthia believes her father's suicide when she was a child is a factor in her pain. “I once told a rheumatologist about my father committing suicide and how I was always cooking and cleaning. She said, ‘it’s always the youngest mothers who get sick first.’”

     

    Future Surveys

    Cynthia is committed to conducting more surveys. “Women reported that filling out the survey helped them, made them feel comforted because they were not the only one feeling and experiencing this,” she said, adding the women had asked for more surveys. She is particularly interested in more details about the women’s use of opioids to treat pain, their geographic location, as well as their use of alternative treatments. She also wants to do more stories about women’s experience, saying “women in pain want to be heard, to tell their full experience.” She wants to give women in pain a voice.

     

    Did you fill out the survey? Do you believe doctors treat you and your pain differently because of your gender? We’d love to hear about your experience in the comments.

     

     

    Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.

Published On: November 21, 2014