{"id":10321,"date":"2016-10-31T07:56:39","date_gmt":"2016-10-31T07:56:39","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=10321"},"modified":"2016-10-31T11:53:02","modified_gmt":"2016-10-31T11:53:02","slug":"a-patients-experience-of-mecfs-and-gaslighting","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/a-patients-experience-of-mecfs-and-gaslighting\/","title":{"rendered":"A patient’s experience of ME\/CFS and gaslighting"},"content":{"rendered":"

The Mighty<\/strong> blog post, by Siobhan Simper<\/a>, 18 Oct 2016: We cannot continue to let doctors ‘Gaslight’ chronic illness patients<\/a><\/p>\n

Author\u2019s warning: This post contains experiences of gaslighting and abuse.<\/p>\n

Recently, I saw an\u00a0all-too-common\u00a0meme <\/a>on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, \u201cno excuses.\u201d Much has been written about the\u00a0problematic nature\u00a0of\u00a0disability\u00a0\u201cinspiration porn.\u201d What shocked me was when I tried to explain the issue with this post, I was attacked as \u201cangry\u201d and \u201cfucked up.\u201d But being labelled \u201ccrazy\u201d for having a chronic illness or disability is nothing new.<\/p>\n

For centuries, it has been common practice to dismiss people who were considered \u201crabble-rousing\u201d as being \u201cmad.\u201d Women especially bore the brunt of these attitudes. During the Salem Witch Trials,\u00a0the women hanged as\u00a0witches were likely to have\u00a0epilepsy\u00a0or\u00a0dissenting views. In the 1800s, women who challenged the status quo\u00a0were at risk of being declared \u201cinsane\u201d and committed to a\u00a0mental asylum. Their husbands, fathers and brothers were usually the ones to\u00a0request institutionalization, whereby an unruly woman would learn to submit to male authority. Many opinionated women were silenced in asylums.<\/p>\n

At the time, women were considered inherently unstable. Symptoms of legitimate medical conditions were lumped under the pseudo-psychiatric label \u201chysteria\u201d \u2013 an easy way to invalidate the struggles\u00a0of thousands of women. It was far more convenient to dismiss genuine pain\u00a0as the result of women\u2019s fragile nature, caused by a rampant womb wandering unchecked through their bodies.<\/p>\n

\u201cGaslighting\u201d is a form of psychological abuse, whereby the perpetrator attempts to convince their victim\u00a0to doubt their own perceptions, with the intent of making them believe they\u00a0are in fact \u201ccrazy.\u201d 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 \u201cGaslight,\u201d in which a husband\u00a0convinces his wife she is going \u201cinsane,\u201d by manipulating her and controlling her environment. It is not hard to see how this plays out for the chronically ill.<\/p>\n

A chronically ill person is already in a uniquely vulnerable position, whereby medical professionals\u00a0act as gatekeepers to proper treatment.\u00a0Doctors hold an inordinate amount of power over someone with a chronic illness, and\u00a0it doesn\u2019t take much to tip the balance further in their favor.<\/p>\n

Last year, I had the bad luck of being booked in with a\u00a0registrar, who took the opportunity to continually tell me how I felt. \u201cYou\u2019re doing well,\u201d he accosted\u00a0ad 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\u00a0I could not walk for five minutes without collapsing, informed me there was nothing wrong with me a little exercise couldn\u2019t fix.<\/p>\n

For those with a mental illness, it\u00a0gets\u00a0worse. We already know physicians\u00a0are\u00a0less likely\u00a0to believe<\/a> a patient has a serious illness if they have a history of psychiatric problems. And when\u00a0we are already primed\u00a0to view people with mental illnesses as \u201cfundamentally unstable,\u201d gaslighting is the next logical leap.<\/p>\n

A\u00a0friend 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.\u00a0When the abuser is a medical professional, or someone in a position of power, why\u00a0wouldn\u2019t we believe their word over that of someone whose testimony is considered so unreliable already?<\/p>\n

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 \u201cfucked up\u201d for finding a disability stereotype offensive: abuse. And what\u2019s worse is it is clear when disabled people are denied their lived experiences are real, they are also denied adequate treatment.<\/p>\n

The latest trend in treatment of\u00a0myalgic encephalomyelitis\/chronic fatigue syndrome(ME\/CFS)\u00a0is\u00a0combining\u00a0graded exercise therapy\u00a0(GET) and cognitive behavioral therapy (CBT). The therapies were popularized by the\u00a0PACE trials, an extensive, government-funded study, which examined GET and CBT as treatments for ME\/CFS. Their results were best summarized by\u00a0The Guardian\u2019s\u00a0headline: \u201cChronic fatigue syndrome patients\u2019 fear of exercise can hinder treatment.\u201d 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.\u00a0Except, it\u00a0didn\u2019t.<\/p>\n

Criticism\u00a0of the\u00a0PACE trials\u00a0has been\u00a0building\u00a0ever 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 \u201ccured.\u201d These measures were tinkered with as the study progressed.\u00a0Those who were unwell enough to attend regular appointments at the hospital were discounted, meaning only the most well people with ME\/CFS were studied.\u00a0Patients were given brochures promoting the effectiveness of CBT and GET as treatments for their illness. The patients who were determined \u201ccured\u201d were deemed as such solely on the basis of a subjective survey, not objective measures such as employment and exercise tests.<\/p>\n

Yet it is only now, after years of campaigning, that the researchers behind PACE are being\u00a0forced 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\u00a0real harm\u00a0to 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?<\/p>\n

On a more personal note, the full force of gaslighting hit me when I was admitted to hospital three years ago. My\u00a0severe ME\/CFS\u00a0had 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,\u00a0and\u00a0I was immediately whisked\u00a0from 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 \u2013 or at least I thought I did. My experiences surpassed even my wildest nightmares.<\/p>\n

A psychiatrist came to my bed. \u201cYou\u2019re depressed, aren\u2019t you,\u201d he insisted.\u00a0I explained, with my limited ability to speak, that I still\u00a0wanted\u00a0to do things, I just physically\u00a0couldn\u2019t. \u201cThat doesn\u2019t mean you aren\u2019t depressed,\u201d he countered. Any first year psych student can tell you that one of the key symptoms of\u00a0depression\u00a0is anhodenia \u2013 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.<\/p>\n

Nurses flocked to bed over the next few days, demanding I admit I was just depressed so this charade could be over. \u201cThere\u2019s no shame in being depressed,\u201d one told me. \u201cI know \u2013 I\u2019m not!\u201d 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 \u2013 so long as I conceded\u00a0I was depressed.<\/p>\n

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\u2019t 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.<\/p>\n

Later that day, my parents rushed in to my room. There were tears on their faces. \u201cWhy did you agree to go to Melbourne?\u201d they asked. I wanted help, I said. A CFS unit could treat me. \u201cBut they\u2019re not sending you to a CFS ward,\u201d my parents cried. \u201cThey are admitting you to an eating disorder unit!\u201d 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\u00a0did not notice that I had lost nearly half my body weight. And they thought I had anorexia.<\/p>\n

Anyone close to me knows I don\u2019t lie. It\u2019s not that I\u00a0won\u2019t, but I simply cannot tell an untruth. Lying\u00a0is 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\u00a0not 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.<\/p>\n

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, \u201cDo you know anything about CFS?\u201d\u00a0to which the doctor retorted, \u201cDo\u00a0you\u00a0know anything about\u00a0eating disorders? Because your daughter has one!\u201d The only people on my side, my parents, put in complaints to the hospital. They were all ignored.<\/p>\n

Despite evidence to the contrary, my medical team\u00a0were convinced I had a hidden eating disorder that my entire social network was in denial about.\u00a0But\u00a0I was so desperate to put on weight, I gladly accepted having a nasal gastric feeding tube shoved down my throat. I was\u00a0happy\u00a0to gain weight.<\/p>\n

My main\u00a0doctor\u00a0later\u00a0threatened to section me. I was scared.\u00a0Sectioning someone under the mental health act is a way to strip away all their rights, their autonomy\u00a0as a person.\u00a0A person\u00a0is 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.<\/p>\n

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\u2019t defend herself, it is the epitome of\u00a0gaslighting.<\/p>\n

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\u00a0I had no mental illness.<\/p>\n

Recovery from gaslighting is one of the hardest things I\u2019ve 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\u00a0based on convincing the ill personthey\u00a0are not sick at all, or that they can overcome illness with the right kind of\u00a0thinking.<\/p>\n

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\u00a0even now, people with a disability, including mental illnesses, are being objectified, marginalized, and brushed off as \u201ccrazy\u201d for the crime of being unwell. Their treatment is often inadequate or non-existent.<\/p>\n

If you think you are being\u00a0gaslighted<\/a>\u00a0in 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.<\/p>\n

Read more by Siobhan <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

The Mighty blog post, by Siobhan Simper, 18 Oct 2016: We cannot continue to let doctors ‘Gaslight’ chronic illness patients Author\u2019s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an\u00a0all-too-common\u00a0meme on social media: the inspirational disabled … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":true,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[182,3244,894,3245,3246],"class_list":["post-10321","post","type-post","status-publish","format-standard","hentry","category-news","tag-disability","tag-gaslighting","tag-mental-health","tag-siobhan-simper","tag-the-mighty"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-2Gt","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/10321","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=10321"}],"version-history":[{"count":3,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/10321\/revisions"}],"predecessor-version":[{"id":10433,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/10321\/revisions\/10433"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=10321"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=10321"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=10321"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}