After a May 2010 soccer injury, New Jersey middle schooler Sarah Kleppe developed intense chronic pain in her foot. It got so bad, she couldn’t stand up without screaming. Just touching her foot was unbearably painful. Over the next few months, she saw more than 25 doctors. Most had no clue what was happening; some told Kleppe she was making it up.
Kleppe, now 18, was eventually diagnosed with reflex sympathetic dystrophy (RSD), also called chronic regional pain syndrome, a neurological condition that causes nerves to misfire and send constant messages of severe pain to the brain. It can cause paralysis and in some people it is chronic, for others it is temporary. After several months of inpatient therapy, Kleppe was pain-free but the scars of being called a liar by medical professionals stay with her.
She found that many of the other female teens in her RSD therapy program had similar negative experiences. Some felt they weren’t taken seriously because of their gender and a few were told they had hysteria. But the constant doubt from doctors is what hurt the most.
Unlike some chronic disabilities such as paraplegia, which are visible, reflex sympathetic dystrophy, like heart defects, asthma and roster of other conditions, can’t be seen.
While the number of girls with an invisible disability is difficult to measure, Invisible Illness Week found that “96 percent of people who live with an illness have an illness that is invisible.” This statistic was interpreted by IIW from 1997 research from theU.S. Department of Commerce. Such people are less likely to get support and proper treatment according to research.
Hannah Epstein, 17, also had RSD a few years ago. “I was always told that my pain was exaggerated and that I was making it up,” she said in an email interview. “My mother was also told that it was her parenting that made me feel the need to ‘invent’ pain because she gave me too much attention.”
Another doctor suggested she had “conversion disorder,” the modernized term for hysteria.
Girls with invisible disabilities have to live every day with peers, teachers and bosses doubting their claims.
“My entire sixth grade experience was people not believing that I was sick,” Epstein said. “People thought I used a wheelchair for fun. They thought I left class crying in pain for attention. They said outright to my face that I was faking and I should just give it up. It hurt. A major factor in my depression during that time was nobody believing how terrible I felt all the time.”
Kleppe faces the same problem. “People assume I’m faking, making a bigger deal out of my disability, or simply that there is nothing wrong with me,” she said. “Physical disabilities, like a broken bone or a torn ligament, are easily visible and often receive responses like, ‘is there anything I can do for you?’ or ‘feel free to take time off to heal.’ Invisible disabilities, like some types of multiple sclerosis, are usually met with comments like ‘suck it up; or ‘are you sure? You look great!’”
Ellen Samuels, associate professor of gender and women’s studies and English at the University of Wisconsin at Madison, also faced skepticism when the cause of her pain wasn’t immediately evident to the doctors.
A few weeks ago she went to the emergency room for chest pains and was diagnosed her with anxiety. Samuels felt the doctors immediately decided she had anxiety without any investigation into her Ehlers-Danlos syndrome.
“No one officially diagnosed me with [hysteria], but it is clearly what they were thinking,” she said in an email interview. She was later diagnosed with intercostal muscle spasms. Samuels said she felt like so many other females who have been given the diagnoses of anxiety and hysteria as a way, she said, to “diminish women’s experiences and control women’s bodies and minds.”
Patronizing Nurses, Doctors
She told the story of a friend who was recently in the emergency room. “The nurses were an hour late with her morphine and when the nurse came in, she was crying. The nurse said ‘Why are you crying?’ and my friend said ‘I’m in so much pain! I’m like the crying face on the pain scale!’ and the nurse said ‘No one cries from pain.’”
Even girls and women without a disability can encounter sexism in the doctor’s office. “Physicians are often patronizing … assuming that we do not know our bodies, assuming that our pains are in our heads,” said Arlene Lev, a social worker, educator, family therapist and gender specialist based in New York, in an online interview.
In a 2009 article, Lev wrote about hysteria diagnosis as a political tool used to medicate angry and powerless women and to take away their children. “I think [females] are often treated aggressively; with psychotropic medication and other (unnecessary) medical treatments,” she told Teen Voices.
On average, females wait about 16 more minutes than men in the emergency room, according to 2008 research published by Academic Emergency Medicine.
“Women are likely to be treated less aggressively until they prove that they are as sick as male patients,” wrote Joe Fassler, the husband of a woman who was disbelieved in the ER, in an article in The Atlantic.
In their 2015 book “The Wrong Prescription for Women,” authors Maureen C. McHugh and Joan C. Chrisler said women and girls are often given medicines for medical conditions they don’t have but are less likely to get the correct diagnosis for a severe condition.