The Trauma of Not Being Seen: Invisible Disability and Modern Day Hysteria

By Siobhan Simper

Recently, a 41-year-old woman with multiple sclerosis had an abusive note left on her car, for using a disabled bay. The note, placed directly above her disabled parking permit on her dashboard, read: “Did you forget your wheelchair???” Her crime was to be out with her teenaged daughter on one of the rare occasions she did not require a cane or wheelchair. As a young Australian suffering from a chronic illness, her story is all too real and common in my experience. It has been the attitudes of others, more so than my own disability itself that has profoundly affected my life and made me cynical.

Strangers I pass in my wheelchair question, “So you only need a wheelchair…sometimes?” The intent is clear from their tone: You don’t have a “real” disability if you are not entirely dependent on a wheelchair. Doctors have refused to test me (which, when finally ordered, came back positive), insisting there was nothing unusual about the fact that I couldn’t walk five minutes without collapsing. While lying paralyzed in a hospital bed, wasting away because I did not have the strength to swallow food any more, I feared doctors more than my likely death. Anorexic, they hissed, while looking upon me as one would look at a piece of shit beneath their shoes. “We know you are faking it,” several nurses jeered.

The casual cruelty of strangers can translate to a real lack of services for people with a disability. If people can’t believe you are truly disabled, why should you deserve any help? Recently I went in search of home help for my family (I live with my parents who care for me, and one of them also has a disability). The responses I received ranged from general helplessness to outright meanness. According to one apologetic government disability support worker, I am categorized as having a “medical condition” and therefore ineligible for any government support. Despite the fact that my condition has been physically disabling. Other service providers offered a similar apology and shrug of the shoulders. The local council home help coordinator was less sympathetic–after several minutes of condescending remarks (being spoken to like a baby seems to be one of the enduring traits of being a young person with a disability)–I was told point blank that I would not be put on the waiting list, would not receive services, because “it would be unfair to give services to people like you.” This is not merely a personal experience: a government inquiry into the experience of people with disabilities in Australia found, “discrimination is a feature of daily life for many people with disabilities and their families. More than 39 per cent of submissions identified discrimination and rights as a vital issue.” One person noted their belief that, “virtually every Australian with a disability encounters human rights violations at some point in their lives and very many experience it every day of their lives .”

Young women in particular bear the burden of disbelief when they fall ill. It wasn’t that long ago that female hysteria was a standard diagnosis for women suffering a variety of ailments. “Wandering womb,” the belief that a women’s uterus literally prowled around the body, causing mayhem, was believed to be a cause of hysteria. Obvious links to a fear of women’s sexuality can be drawn. It seems that the very nature of being a woman predisposes one to having claims of illness rejected. It might have been the 1800s when diagnoses of hysteria peaked, but in 2016, I believe the attitude lingers.

Knowing the treatment I have experienced at the hands of medical professionals, young women often share their stories with me. They tell me tales of passing out in emergency from pain, while being told by medical staff they just can’t cope with having their a period; having a 10cm cyst removed after years of being dismissed as a drama queen. Or having doctors flippantly dismiss chest pain as anxiety, only to discover later it was costochondritis (inflammation of cartilage in the chest). In a moving article in The Atlantic, Joe Fassler describes the agony his wife endured for 14 1/2 hours in emergency with ovarian torsion, which was dismissed as kidney stones without a single exam. Her physical scars will heal, he says, but what will endure is, “the trauma of not being seen.”

Meanwhile, a young man I know recently presented at emergency with vague abdominal pains. He was immediately admitted and had the attention of a number of doctors, nurses and specialists, who put him straight on a morphine drip and promised they would do everything within their power to find out what was wrong with him. No cause was ever found, and the pain did not repeat itself.

Anecdotal evidence, I know–but the statistics support my experience. Women presenting to emergency with acute abdominal pain are up to 25% less likely to receive pain   than men. More women than men die from cardiovascular-related causes every year, most likely due to a lack of recognition of how symptoms present themselves in women. This is hardly surprising considering the results of a 2005 survey that found primary care physicians, ob/gyns and cardiologists did not know about the higher rate of female fatalities.

In areas of social and economic participation such as housing security, income, employment and education, women with disabilities are far more likely to experience high levels of disadvantage compared to both men and women without disabilities. Compared to men with disabilities, women with disabilities are more likely to live on low incomes, more likely to live in rental accommodation and unaffordable housing, and less likely to be in paid employment. Women with disabilities are also far more likely to be victims of violence, and receive less support for it. This violence often occurs in institutionalized care or hospital, with 67% of women admitted to mental health inpatient services reporting harassment during admission.

In a medical culture where doctors hold all the power, diagnosis is a means of control. No diagnosis means no treatment, and a population of people who are more disabled by their health problems than they ever should be. The social model of disability proposes that the greatest “disabling” force is not the disability itself, but the barriers placed by society which prevent full participation in life. Lack of recognition, diagnosis and treatment can place some women in a paralyzing no mans’ land, where their illness or disability profoundly affects their life, but not enough to warrant medical attention or support.

It terrifies me that, as a woman, only a handful of medical professionals take my disability seriously. I fear for my female friends, who are laughed out of the emergency department when out of their mind in pain. I weep for those women who have died unnecessarily, denied basic medical care on account of their gender. The entire medical system needs to change before these women have justice, yet my experiences with junior doctors do not inspire me with hope. A reform in medical culture with an emphasis on greater respect for women, and an overhauled education system in which women’s symptoms are placed on par with men’s are needed before women start to see any sort of equity in medical treatment.