The Mighty blog post, by Siobhan Simper, 18 Oct 2016: We cannot continue to let doctors ‘Gaslight’ chronic illness patients

Author’s warning: This post contains experiences of gaslighting and abuse.

Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I tried to explain the issue with this post, I was attacked as “angry” and “fucked up.” But being labelled “crazy” for having a chronic illness or disability is nothing new.

For centuries, it has been common practice to dismiss people who were considered “rabble-rousing” as being “mad.” Women especially bore the brunt of these attitudes. During the Salem Witch Trials, the women hanged as witches were likely to have epilepsy or dissenting views. In the 1800s, women who challenged the status quo were at risk of being declared “insane” and committed to a mental asylum. Their husbands, fathers and brothers were usually the ones to request institutionalization, whereby an unruly woman would learn to submit to male authority. Many opinionated women were silenced in asylums.

At the time, women were considered inherently unstable. Symptoms of legitimate medical conditions were lumped under the pseudo-psychiatric label “hysteria” – an easy way to invalidate the struggles of thousands of women. It was far more convenient to dismiss genuine pain as the result of women’s fragile nature, caused by a rampant womb wandering unchecked through their bodies.

“Gaslighting” is a form of psychological abuse, whereby the perpetrator attempts to convince their victim to doubt their own perceptions, with the intent of making them believe they are in fact “crazy.” As the victim comes to doubt their sanity, they become more reliant on their abuser and less connected with the outside world. The term comes from the 1938 play-turned-film “Gaslight,” in which a husband convinces his wife she is going “insane,” by manipulating her and controlling her environment. It is not hard to see how this plays out for the chronically ill.

A chronically ill person is already in a uniquely vulnerable position, whereby medical professionals act as gatekeepers to proper treatment. Doctors hold an inordinate amount of power over someone with a chronic illness, and it doesn’t take much to tip the balance further in their favor.

Last year, I had the bad luck of being booked in with a registrar, who took the opportunity to continually tell me how I felt. “You’re doing well,” he accosted ad nauseam, in response to my continued protests that my health was, in fact, not good. I have paid $120 for the privilege of consulting with a general specialist who, after listening to me explain I could not walk for five minutes without collapsing, informed me there was nothing wrong with me a little exercise couldn’t fix.

For those with a mental illness, it gets worse. We already know physicians are less likely to believe a patient has a serious illness if they have a history of psychiatric problems. And when we are already primed to view people with mental illnesses as “fundamentally unstable,” gaslighting is the next logical leap.

A friend on a mental ward was accused of being a pathological liar by the head psychiatrist, merely because she had a habit of touching her face when nervous. Another was told she had no hope of recovery, so she should stop trying. When the abuser is a medical professional, or someone in a position of power, why wouldn’t we believe their word over that of someone whose testimony is considered so unreliable already?

Every time a patient is told their symptoms are not real: abuse. Every time someone with a chronic illness is told their illness is a result of them not trying X, Y, Z therapy: abuse. When a young woman is called “fucked up” for finding a disability stereotype offensive: abuse. And what’s worse is it is clear when disabled people are denied their lived experiences are real, they are also denied adequate treatment.

The latest trend in treatment of myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS) is combining graded exercise therapy (GET) and cognitive behavioral therapy (CBT). The therapies were popularized by the PACE trials, an extensive, government-funded study, which examined GET and CBT as treatments for ME/CFS. Their results were best summarized by The Guardian’s headline: “Chronic fatigue syndrome patients’ fear of exercise can hinder treatment.” The PACE trials confirmed what so many medical professionals already believed: that ME/CFS was nothing more than a psychological disorder, a combination of mental and physical deconditioning which could be easily remedied with a bit of exercise and right thinking. Except, it didn’t.

Criticism of the PACE trials has been building ever since it was published. Scales for measuring illness were so poorly designed that patients could be simultaneously qualified as disabled enough for participation and well enough to be “cured.” These measures were tinkered with as the study progressed. Those who were unwell enough to attend regular appointments at the hospital were discounted, meaning only the most well people with ME/CFS were studied. Patients were given brochures promoting the effectiveness of CBT and GET as treatments for their illness. The patients who were determined “cured” were deemed as such solely on the basis of a subjective survey, not objective measures such as employment and exercise tests.

Yet it is only now, after years of campaigning, that the researchers behind PACE are being forced to release their raw data. The belief that ME/CFS was psychosomatic was so ingrained, that it has taken five years for their research methods to be brought into question. Meanwhile, this research has had real implications for ME/CFS patients. Treatments such as GET have been documented to cause real harm to people with ME/CFS. And who knows how many seriously ill ME/CFS patients were denied a diagnosis or real treatment on the basis of these trials?

On a more personal note, the full force of gaslighting hit me when I was admitted to hospital three years ago. My severe ME/CFS had affected me to the point where I was in bed 24/7, so weak I was unable to sit upright, talk, or feed myself. I was wasting away to nothing. My GP decided I needed admission, so I feebly agreed, knowing my health insurance meant I would have a private, quiet room in the local private hospital. But once I was admitted, my GP went on holiday, and I was immediately whisked from my cosy room to an open room in ICU in the public hospital. I remember crying and begging mum to not take me there, as I knew full well how I would be treated – or at least I thought I did. My experiences surpassed even my wildest nightmares.

A psychiatrist came to my bed. “You’re depressed, aren’t you,” he insisted. I explained, with my limited ability to speak, that I still wanted to do things, I just physically couldn’t. “That doesn’t mean you aren’t depressed,” he countered. Any first year psych student can tell you that one of the key symptoms of depression is anhodenia – an inability to experience pleasure, even in activities that were formerly enjoyed. I tried in vain to signal I still derived enjoyment from life, but my protests were silenced.

Nurses flocked to bed over the next few days, demanding I admit I was just depressed so this charade could be over. “There’s no shame in being depressed,” one told me. “I know – I’m not!” The psychiatrist visited again. He promised he could help me, he could stop the nurses and other doctors from treating me badly and take me to a safe place – so long as I conceded I was depressed.

Next, I was told of a CFS unit in Melbourne, one which would help me, like they had helped many patients before me. A place where they would understand and treat my symptoms. I just had to agree to go. After a long exhortation from a nurse who I thought genuinely cared for me, I agreed to go. I cannot understate how big this decision was for me. I hadn’t left my bed in a year and my hometown in three years. Going to Melbourne, a four-hour car trip away, was not a decision I took lightly. But I deemed it worth the pain, if they could truly treat me.

Later that day, my parents rushed in to my room. There were tears on their faces. “Why did you agree to go to Melbourne?” they asked. I wanted help, I said. A CFS unit could treat me. “But they’re not sending you to a CFS ward,” my parents cried. “They are admitting you to an eating disorder unit!” An eating disorder. Nothing had been further from my mind as I lay there all those months, in agony. I was so consumed by my ME/CFS I did not notice that I had lost nearly half my body weight. And they thought I had anorexia.

Anyone close to me knows I don’t lie. It’s not that I won’t, but I simply cannot tell an untruth. Lying is antithetical to my nature; the very idea of telling a lie upsets me. So the suggestion that I had formed an elaborate deception to mislead not only doctors, but my parents and everyone I loved, was not only offensive, but impossible. The thought that the nurses and doctors, who were meant to be looking after me, had deliberately deceived me to admit me to a mental hospital made me sick.

The next few weeks, hospital staff exerted all their power over me and my parents to force home their conclusion that I did not have a real physical illness. My parents recall a particularly nasty encounter with a weekend doctor. Dad begged in desperation, “Do you know anything about CFS?” to which the doctor retorted, “Do you know anything about eating disorders? Because your daughter has one!” The only people on my side, my parents, put in complaints to the hospital. They were all ignored.

Despite evidence to the contrary, my medical team were convinced I had a hidden eating disorder that my entire social network was in denial about. But I was so desperate to put on weight, I gladly accepted having a nasal gastric feeding tube shoved down my throat. I was happy to gain weight.

My main doctor later threatened to section me. I was scared. Sectioning someone under the mental health act is a way to strip away all their rights, their autonomy as a person. A person is deemed mentally incapable of making decisions for themselves, and can be enforceably hospitalized by their medical team. It takes a legal appeal to remove this order.

There are some people who are so unwell that they genuinely cannot take care of themselves, and being sectioned can be the difference between life and death. But as a tool to terrify and intimidate a young woman, who is so physically disabled she can’t defend herself, it is the epitome of gaslighting.

I agreed to leave, just to escape that doctor. Upon arrival at the eating disorders unit, it took all of five minutes for the team to determine I had no mental illness.

Recovery from gaslighting is one of the hardest things I’ve ever had to do. Having your own perceptions warped to the point where you start to doubt your own sanity is a long road to come back from. You have been taught to not trust your own convictions, so how can you believe your own thoughts after that? It is little wonder so many chronically ill people buy into therapies based on convincing the ill personthey are not sick at all, or that they can overcome illness with the right kind of thinking.

It would be easy to dismiss gaslighting of disabled people as a relic of the past, something we can shake our heads at while feeling oh-so-civilized. But the sad fact is that even now, people with a disability, including mental illnesses, are being objectified, marginalized, and brushed off as “crazy” for the crime of being unwell. Their treatment is often inadequate or non-existent.

If you think you are being gaslighted in a relationship, please, please seek help. For those with a chronic illness, who are often in a continual state of being gaslighted by doctors, friends and society at large, hold strong and true. Your experiences are real, and your feelings valid. To both you and me.

Read more by Siobhan