Siobhan Simper

@siobhan-simper | contributor
Siobhan Simper is a 20-something year old living in country Victoria. She blogs about chronic illness, sewing, and feminism at chronicallysiobhan.wordpress.com
Siobhan Simper

Difference Between Chronic Fatigue and ME/CFS

May 12th is International ME/CFS and FM Awareness Day, and throughout the month people are sharing posts which shed a bit more light on these misunderstood illnesses. For more, check out #May12BlogBomb, #MEAwarenessDay and #MillionsMissing on Twitter and Instagram. One of the most common misconceptions about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the difference between the specific illness and other types of fatigue. This simple misunderstanding snowballs into real challenges for those with ME/CFS, who have to contend with people’s assumptions that they are not seriously unwell – just tired. The common name of the disease (chronic fatigue syndrome) encourages these misconceptions. The conflation between different types of fatigue is just one of the many reasons why I believe chronic fatigue syndrome should be completely replaced with the term “myalgic encephalomyelitis.” Above: The fact that images like this inevitably accompany articles about ME/CFS doesn’t help. Today I will compare different types of fatigue to make clear the difference between other types of tiredness and ME/CFS. Fatigue We all get tired. Even perfectly healthy individuals experience ordinary fatigue in the course of their day. Some examples of fatigue as a normal response to life circumstances include: Not sleeping well due to the heat and feeling drowsy the next day Being tired after a long day of work Feeling fatigued due to stressful life circumstances Being worn out after a gym session Having a newborn baby and being exhausted from their constant screaming and crying Before I fell ill, I had trouble sleeping and used to complain of exhaustion after not catching a break for days at a time (god, I wish I could go back to those days!). School was taxing, and I would get a bit worn out after traveling hours in a day just to get close to civilization. But that did not mean I had a chronic illness. One of the quickest ways to get on the wrong side of someone with a chronic illness is to try to compare your healthy tiredness to their debilitating, medically-induced fatigue. Trust me when I say you don’t understand what someone with a chronic illness is going through just because you are a bit worn out after achieving things they might not come close to in their wildest dreams. Does your fatigue have a (reasonable) cause? Then you’re probably not sick, just human. Chronic Fatigue Chronic fatigue is a hallmark of a great number of chronic illnesses. I would even go so far as to say that nearly every chronic illness has the symptom of chronic fatigue – but that does not mean those who experience it have chronic fatigue syndrome. Generally, if chronic fatigue has another medical explanation (such as another illness), you are precluded from being diagnosed with chronic fatigue syndrome. It’s not a tack-on at the end of a list of multiple illnesses; it is an illness in its own right with a very specific set of symptoms. Here are some examples of how people with chronic illnesses can experience chronic fatigue: A Crohn’s patient who is worn out by pain and inflammation Someone with POTS who is so weak and dizzy they are unable to shower themselves Someone who has depression and finds their fatigue so overwhelming they cannot leave their bed Above: While we’re talking about pictures that inadequately represent illnesses, what’s worse: the ME/CFS tired lady, or this faux-Gumby picture I found under stock images of depression? In fact, chronic fatigue is such a universal symptom, it makes me wonder why one specific disease with a myriad of symptoms was singled out to be named “chronic fatigue syndrome” when you could practically name any disease the same. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome We’ve finally made it to chronic fatigue syndrome: the disease. As I’ve explained, “fatigue” does not quite cover the range of symptoms experienced during this disease. So what does ME/CFS really look like? If you are correctly diagnosed under current guidelines (I am using the International Consensus Criteria and IOM report as an example here), as well as profound and prolonged fatigue which is unalleviated by rest and lasts more than six months, you will experience: Post-exertional neuroimmune exhaustion (a disproportionate physiological response to exertion, which can be delayed and last for hours, days, weeks or months after the event) Neurological abnormalities such as cognitive impairment, delayed reactions, short-term memory loss, abnormal sleep patterns, headaches Neurosensory and perceptual disturbances such as a sensitivity to light/sound/touch or the inability to focus vision Motor impairments such as ataxia, pain, poor coordination Immune symptoms (unrelenting flu-like symptoms) Gastrointestinal complaints Cardiovascular dysfunction such as POTS and OI (inability to maintain regular blood pressure and heart rate upon standing) A one in four chance of being wheelchair-, house- or bed-bound A worse quality of life than those with conditions such as kidney failure, heart disease or MS and more equivalent to terminal cancer or stroke This is just a short summary – the complexities of ME/CFS are too much to describe in great detail in this forum. Suffice to say, the symptoms are a great deal more than just “fatigue!” Above: Whitney Dafoe , one of the many faces of ME. From healthy travel photographer to bedridden and paralyzed. If you wish to learn more about the true nature of ME/CFS, the International Consensus Primer is a good place to start. It was written by a team of specialists in the field specifically to address the confusion between patients with ME and those with other forms of fatigue, and narrow an overly-inclusive criteria which mixed the two. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Kerkez.

Siobhan Simper

Coping With Grief Over Having a Chronic Illness

Being chronically ill can often mean existing in a continual state of grieving. You grieve for the person you once were. You grieve for the loved ones who have left you because it is all “too hard.” You grieve for the job you lost, the study you had to give up, the volunteer work you devoted yourself to. You grieve for the parties you are no longer invited to, the weddings, funerals and functions you cannot attend. Loved ones live and die while you watch from your bed. If you have had surgeries, you may grieve for your body, the parts you have lost and the damage done to an already fragile being. You grieve for the person who did not know trauma, did not know pain and did not know that some people spend their whole lives in a perpetual state of sickness they can do nothing about. Many of us have difficulty handling grief. We might feel discomfited by a display of “negative” emotions in a society that praises positivity above all, even to the point of repression and falsity. No one wants to be confronted with a reminder of their own morbidity and mortality, to be made aware that the world is not a safe place. Those experiencing grief – not only the chronically ill, but those who have lost loved ones or experienced other trauma in their lives – will know what I mean. The looks you get when you admit you are not, in fact, doing fine. The hasty changing of subjects when your feelings come to the fore or the general shuffling of feet and looks of discomfit when you are honest about your life. “Get over it,” is a not-uncommonly heard phrase. “Move on.” Given that nearly every single person will experience grief in their lives, this kind of insensitivity seems inexcusable. Perhaps the media is to blame – as a society, we do not discuss grief well (or chronic illness, for that matter). In a world that prefers the black and white – person gets sick, they get better, they are happy, the end – there is no room for shades of grey, for those who have to grapple with their bodies and emotions day after day and manage an unwieldy tangle into some kind of life. It’s time we start acknowledging that grief is a process that can take a lifetime. That it is OK to not be OK. That being chronically ill can take a significant mental and emotional toll, and that we might grieve not only over our illnesses, but for those who have left us because of them. No one likes loss – especially not those who are in the process of grieving themselves. We may have no choice, but you do. If someone you love is sick, traumatized or otherwise grieving, you have a choice. You can run away and pretend like if you just shut your eyes tight enough, the terrible things of this world may pass you by, like so many bogeymen in the night. Or, you can embrace the world, and by extension your loved ones, in all shades of grey – happy, grieving, sick, sometimes fine, sometimes not. Reaching out a hand of support – sending a text message, making a call, asking “how are you?” – takes only an instant, but makes an indelible impact. If you open your heart to someone who needs you, you may well find that both of your lives have been enriched. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via tatyana_tomsickova.

Siobhan Simper

Christmas Gift Ideas for Someone With Myalgic Encephalomyelitis (ME)

I still remember the excitement of making a Christmas wish list as a child. I would scour my magazines for the latest toys and painstakingly handwrite a letter to Santa with my chosen cut-outs pasted next to my list. Some days later, I would receive a postcard from Santa himself, assuring me I would have the best Christmas I could ever hope for! Making a wish list as an adult with a chronic illness is slightly different to my childhood memories. Living with severe myalgic encephalomyelitis (ME) means my list is less toy-heavy and more focused on the experiences that would improve my life. Here’s my wish list for this Christmas, as someone with severe ME: 1. A drawer full of spoons For the chronically ill person or “spoonie,” spoons represent the amount of energy you have allocated for one day. A particularly bad day might be low on spoons, or if you have spoons in abundance, you can achieve more than you hoped for. A commonly expressed wish in the chronic illness community is for a drawer full of spoons, and that is what I would like to bestow this Christmas on myself and all spoonies. 2. Love and support Christmas is a time to celebrate with loved ones, but it can be a hard reminder for those lacking support systems. Many spoonies find that friends and family drop out of their lives, unable or unwilling to deal with the reality of living with a chronic illness. Although people have left my life since falling ill, I am lucky enough to now be surrounded by those who love and care for me. I wish the same for every person with a chronic illness this year. Everyone deserves love and respect, especially those with a chronic illness. 3. A helpful GP General practitioners and other medical professionals act as the gatekeepers to treatment for the chronically ill. At best, they can open the doors to appropriate medical intervention and a better life, but when they are unwilling to help, they can have a devastating impact on the lives of their patients. Having an unusual illness, there are not many medical professionals who can shed light on my situation, and the thought of actual treatment is a far-off dream. I hope and pray one day that ME will have more respect in the medical community and that doctors everywhere will better understand the needs of their patients. 4. Mobility aids aplenty Above: the author in her wheelchair Shower chair? Check. Wheelchair? You betcha. Folding chair? Next on my list. Mobility aids can tangibly improve the lives of the disabled and chronically ill. I know I would not be able to shower myself without my handy shower chair or visit large stores without my wheelchair. There are so many fantastic aids out there, which are increasingly adopting fashionable designs so we spoonies can look good as well as do more. My only problem is choosing just one for my list! 5. A supportive community No man is an island, or so John Donne wrote. It is human nature to rely on each other, even more so when you have a chronic illness. But unfortunately it so often seems that the community at large – our lawmakers, community organizations and government employees – do not work to support those most at need and instead actively work against them. I have been attacked over the phone by a council worker who tried her utmost to deny me the home help I so desperately required. Workers at disability organizations, who should be offering me help instead tell me I am not “disabled” enough to access their services. The chronically ill will never thrive in a society which denies them the help they need to get by. I believe all of the goals on my wish list could be achieved if disability support had pride of place in public policy. I wish all the spoonies out there a very merry Christmas and that you receive all you have on your wish list and more. We want to hear your story. Become a Mighty contributor here . Thinkstock image up top by Gokcemim

Siobhan Simper

Why I Think 'Chronic Fatigue Syndrome' Needs a Name Change

Six years ago, I was diagnosed with myalgic encephalomyelitis (ME), or as you might know it, chronic fatigue syndrome. You may be surprised to learn the most challenging aspect of this illness for me is not the disability itself, but the attitudes of others towards me. I believe negative attitudes towards ME patients, especially in the medical community, are informed by the inaccurate, dismissive and unfortunately prevalent term, chronic fatigue syndrome (CFS). If you have this disease or know someone who does, by now you will have realized how grossly inadequate and offensive the term “chronic fatigue syndrome” is. For those who have had their lives ripped apart by this illness, who are stuck in bed, can no longer walk or are unable to work or live independently for the rest of their lives, “chronic fatigue” is an insult. If “chronic fatigue” was all we had, would 85 percent of patients be unable to work? Would we resign ourselves to such a diminished, agonizing life if we were merely tired? “Chronic fatigue syndrome” makes a mockery of our struggle. It encourages medical professionals to laugh at us across their desk, joking, “I’m chronically fatigued too!” It does not begin to encompass the wide range of symptoms this disease causes, from sensory disturbances, to cognitive dysfunction, blood pressure disorders, and sometimes complete failure of every single component of our bodies. It diminishes our pain and delegitimizes our lived experiences. Would you call someone who has been in bed for 15 years, unable to read, watch TV or use the bathroom by themselves, “chronically fatigued”? The term is so inaccurate — you might as well call pneumonia “chronic cough syndrome” or Crohn’s disease “chronic shitting syndrome.” Every chronic illness is accompanied by oppressive fatigue, yet most have correct, descriptive names which do not belie the true nature of the disease. Imagine the outrage if we tried to strip other diseases of their legitimate, scientific name and replace them with a term that had nothing to do with the illness. No, the only purpose the term “chronic fatigue syndrome” serves is to stigmatize those with it. Names are laden with meaning and act as a shorthand to understanding. What meaning does “chronic fatigue syndrome” convey? That what we experience is nothing worse than what an able-bodied person may feel at the end of a long work day or a hard workout session? Nothing could be further from the truth. “The name [chronic fatigue syndrome] is condescending and so grossly misleading…This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called ‘fatigue’ is a gross misnomer.” – Laura Hillenbrand In the 1980s, the name first proposed for the disease we know now as AIDS (acquired immune deficiency syndrome) was GRID: gay-related immune deficiency. The terms “gay cancer” and “gay plague” were also used. Multiple sclerosis was once known as “hysterical paralysis,” a malaise assumed to affect hypochondriacs who couldn’t cope with life. The implications of these terms are obvious and shocking to our modern sensibilities. Why, then, do we persist with the term “chronic fatigue syndrome”? Myalgic encephalomyelitis (ME) is a term slowly replacing chronic fatigue syndrome (a mouthful, I know – it took me a long time to be able to pronounce and spell it!). “Myaglic” refers to muscular symptoms such as fatigue, pain, twitching and ataxia; and “encephalomyelitis” indicates symptoms of the brain, such as cognitive dysfunction, problems with speech, memory, concentration, balance, and sensory processing. In full, it means “inflammation of the brain and spinal cord.” The differences between both terms are immediate and striking. ME not only sounds more scientific, it goes some way to actually describe the illness. It suggests symptoms and a cause. Most importantly, myalgic encephalomyelitis is a term that demands respect. It is the difference between “hysterical paralysis” and “multiple sclerosis.” Some argue ME is not an entirely accurate term, as there is no hard biological evidence of said inflammation in patients. However, recent research indicates this name is medically justified. And even if it were not, I contend it is still more accurate a descriptor than CFS. There are many names which have very little to do with the true nature of the illness (e.g. malaria means “bad air”), so I suspect this argument has less to do with scientific accuracy than trying to deny already-alienated patients’ legitimacy. Other moves have been made in changing the nomenclature of this illness. An Institute of Medicine panel recently reviewed the available evidence and found the name “chronic fatigue syndrome” affected perceptions of the illness in patients, friends and family, and medical professionals. They determined that the label trivialized the seriousness of the condition and promoted misunderstanding of it symptoms and effects. So far, so good. They then proposed a new name: systemic exertion intolerance disease (SEID). To this, I say: not good enough. I didn’t think it possible for a more insulting term than “chronic fatigue syndrome” to be coined, but somehow they managed it. Perhaps the fact that more than half the members on the panel had no professional expertise in ME/CFS helped. SEID is another joke name, a descriptor that describes nothing. It trivializes patients’ experiences and provides yet more fodder for those who would mock our condition (“I’ve got exertion intolerance too!”). “Intolerance” implies if we avoided “exertion” (whatever that means), we would be fine, like a lactose intolerant person who eschews dairy products. And again, it fails to suggest any information about the true nature or symptoms of the disease. Not surprisingly, this name is unpopular among the ME/CFS community. A follow-up survey of ME/CFS patients found 70 percent believed the new name lacked legitimacy, with most respondents concerned the name suggests the disease is caused by something other than a physiological disease process (such as laziness, fatigue, deconditioning or psychological problems). Half of respondents felt angry about the new name (for good reason!). A psychologist who has worked with ME/CFS for many years published some of his patients’ comments regarding the name change: “This new name is an abomination!”“Absolutely outrageous and intolerable!”“I find it highly offensive and misleading.”“It is pathetic, degrading and demeaning.”“It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”“(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”“The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.” As much as I desire it, we clearly have a long way to go before there is any respect for the horrific nature of this disease. I will continue to use ME/CFS in my writings and attempt to educate those I know about the implications of the term CFS. I can only hope one day this illness will have a commonly accepted name which accurately reflects the devastation wrought on patients. Until then, I am resigned to explaining to people that I am not just “chronically fatigued.” This piece is from a series about ME/CFS, originally published on Chronically Siobhan. We want to hear your story. Become a Mighty contributor here . Stock photo by lekcej

Siobhan Simper

ME/CFS and Gaslighting: What to Do When Doctors Don't Believe You

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. We want to hear your story. Become a Mighty contributor here . Image by ayelet keshet

Siobhan Simper

I Refuse to Be a 'Good Disabled' Person

In a recent story I wrote for The Mighty, I made light of some of the situations my chronic illness has landed me in. Afterwards, I received many comments complimenting me on my ability to make the best out of my illness. I’m not sure that was my intent when writing. Sometimes you have to laugh at the ridiculous situations your illness places you in (strolling naked along a hospital corridor after being showered by nurses? Anyone?) — and I have grown as a person since becoming sick. However, this doesn’t mean I have to be grateful for my illness, or enjoy it. I’m wary of perpetuating the stereotype of the “Good Disabled” person. That is, someone who is thankful for their condition, who has learned from it and become a Better Person. Someone who tries their darnedest to get better, who visits doctors regularly and smiles and nods when they are told they must be faking it, or should try X therapy again. Someone who isn’t visibly disabled, and doesn’t make able-bodied people feel uncomfortable by being so. In other words, someone who hides their disability. Woefully inaccurate media depictions of disability reflect society’s tendency to shun the lived experiences of disabled people. In “The Fault in Our Stars,” attractive teenagers fall in love, with cancer acting as only another obstacle to their melodramatically fated relationship. It rears its ugly head only when convenient to the plot: lung collapse and violent coughing take a back seat when a character needs to climb a steep staircase, then later make love to her teenage boyfriend. Quirky characters exist with a wink and nod towards Asperger’s – tidy, pedantic and unchanging. The cutesy treatment obviates the real challenges that come with being on the spectrum, such as sensory processing disorder, social anxiety, and feeling adrift in a world of social conventions that are impossible to understand. Mental illness serves as a neon warning sign to viewers: THIS CHARACTER IS DANGEROUS. Despite the mentally ill being more at risk of being victims of violence rather than perpetrators, all it takes is a diagnosis to turn a TV character into a mass murderer. I nearly cried when my beloved “Midsomer Murders” (I know, I know) concluded a recent mystery by unveiling the murderer as a traumatized woman who had struggled to overcome a host of anxiety disorders, including OCD and agoraphobia, after her daughter’s death many years ago. The fact that she had been abused and manipulated for years by her supposed best friend and counselor, who had killed her daughter, was of no consequence. The “Evil Cripple” is a trope that helps audiences recognize who they should fear in a story. We know villains by their wheelchairs, canes, ugly scars and, in the case of “Casino Royale’s” Le Chiffre, an ever-present asthma pump. The implication is clear: the disabled are “other” and therefore sinister. Even in the rare case that a character’s disability is portrayed accurately, you can be almost guaranteed that they will not be played by a disabled actor. The film industry has no qualms about churning out tropes of disability, no matter how inaccurate or offensive, but apparently draws the line at presenting actual disability on screen. The only acceptable disability, it would seem, is a fake one. But as we people with disabilities do not live in the movie world, we are forced to find other ways to appease our real-life audience. Instead, we become the “Good Disabled.” The “Good Disabled” only exist relative to the able-bodied people around them. They are denied personality, dreams, hopes and vision. They are the essence of inspiration porn; based on athlete Scott Hamilton’s now-famous quip, “the only disability in life is a bad attitude.” (He offered no such sage advice for those who were not privileged enough to be able to rely on their body for their career.) Pictures of men, women and children with visible disabilities are plastered all over Facebook, often without their consent, to act as a reminder to able-bodied people that “at least they don’t have it that bad.” No one asks the subject of the image what they think. In a society where disability erasure is like second nature, being disabled — not “Good Disabled” — is a bold statement. Acknowledging that having a disability or chronic illness can be really, really s***, is shocking. And refusing to thank God, the universe and everything for a disability can seem like ungratefulness (why can’t you just be happy you’re ill?) Perhaps this is because when the disabled start to express these kinds of opinions, they force others to look at them as people, rather than inspiration or stereotypes. We spoonies have it within our power to reject society’s ableist narratives and build our own. Movements such as cripple punk celebrate the “Bad Disabled” – people who smoke, drink, and eat junk food. Who don’t try shoving kale up their asses because someone on the Internet said so. People who rely on walking aids, who decorate their canes, and who refuse to be silenced. Urban Dictionary sums it up: “A movement that is exclusively by the physically disabled for the physically disabled. It’s about rejecting pity, inspiration porn, & all other forms of ableism. It ejects the “good cripple” mythos. Cripple Punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn’t “tried everything.” Cripple Punk fights internalized ableism & fully supports those struggling with it. It respects intersections of race, culture, gender, sexual/romantic orientation, size, intersex status, mental illness/neuroatypical status, survivor status, etc. Cripple Punk does not pander to the able bodied.” Cripple punk promotes what is truly a radical idea – that disabled people can own their body as is. There is no need to to strive to conform or be thankful for our fate. Enforced positivity is rejected. Cripple punk infuses disabled bodies with agency, an element which is denied by so much conventional treatment of disability. Our disabled bodies can exist in a public space, without apology or a requisite companion/carer to diffuse our “difference.” We can dance, unashamed, as Stella Young did (before being patronized by those surprised by the presence of a disabled body on the dance floor). In cpunk, disabled people are autonomous. We choose how we feel about our bodies, freed from the constraints of the judgment of others. We disabled folk are not here for inspiration. We refuse to gratify an ableist belief that if we just try to be happier, our physical disabilities can be “overcome.” Yes, I can laugh at my illness, and yes, I am truly thankful for the lessons I have learned along the way. I can celebrate the bright side of my illness, while acknowledging the devastating impact it has had on my life. Because I am not your “Good Disabled,” and nor should I be. I am unapologetically disabled. This post originally appeared on Chronically Siobhan.

Siobhan Simper

The Downsides and Silver Linings of Chronic Fatigue Syndrome

As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on some of my worst experiences of living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), I want to highlight the empowering, edifying, and downright funny aspects of life as a spoonie. 1. Downside: I’ve had my dignity stripped from me by being showered by nurses and having them inspect my everything — from the toilet bowl to sanitary pads to the food left on my plate. Nothing will take away the memory of having a nurse prod and and poke at my business in the toilet bowl, nodding approvingly. Silver lining: Hey, with no dignity left, I have nothing to fear! Public nudity? No problem! Clothing malfunction? That’s a laugh. Even the most uncomfortable of doctor’s tests is a breeze now. The most painful procedures are nothing compared to the awkwardness of having a cannula inexpertly inserted, or a tube put down your throat. 2. Downside: “True friends are like diamonds, precious and rare, fake friends are like autumn leaves, found everywhere.” As trite as this quote seems, it perfectly illustrates the nature of friendship when you have a chronic illness. Friends slip away at an alarming rate when you are sick: plenty are shed at first sight of a diagnosis, others endure a bit longer but eventually become weary of being friends with someone who is always ill. Nothing quite matches the heartbreak of unanswered messages, lonely days and nights, and the memories of those who no longer wish to be in your life. Silver lining: Who, at the tender age of 26, can say that all their friends are true? I often think that my struggling is worth it, merely for the fact that all my false friends are long gone. Those who remain are true friends, who wipe away my tears, celebrate my triumphs, and understand that I can’t do things most able-bodied people can. Their number may be few, but the joy they bring to my life is unquantifiable. 3. Downside: Today, my biggest challenge was having a shower. Undressing, standing, feeling the water on my skin: they all drain me of precious energy. Washing my hair means struggling to lift my arms above my head and hoping I don’t faint from the effort. Once I dry myself off and dress again, I am wrecked. They sure aren’t joking about the “fatigue” part of chronic fatigue syndrome! Everyday tasks become mountainous obstacles, and actions able bodied people could perform without thinking – opening a jar of jam, putting socks on – are complex challenges requiring an extraordinary power of the will. Silver lining: Because this illness requires so much of me just to perform the simplest tasks, my conception of “tired” before becoming ill has been thrown out the window. Healthy me would toss and turn in bed due to insomnia, sometimes going days without a wink of sleep. I could barely function on no sleep before, but now? Lack of sleep is no problem! A bad virus left me shivering and shaking on the couch for a week, and bemoaning my fate. Those symptoms are now part of my “good days” and something for which I am incredibly grateful! I even yearn for the good old days of having only glandular fever, and not the complex, neurological disease which now consumes my body. We spoonies are stronger than anyone thinks. 4. Downside: I am facing the abyss. Trying to make sense of what has happened to me, the pain I have experienced, is too much for my feeble mind to handle. My eyes stare at the prayer on my phone, my lips recite it over and over again, but even my faith can’t explain why life is just so awful for not only myself, but so many others who are struggling. Tears well in my eyes. Sometimes, I think, I wish I could go back to how I was before — ignorant of what suffering meant, healthy, able-bodied and guileless. Silver lining: Living a charmed, healthy life, it can be near impossible to understand just how terrible life can be. As hard as I tried to be empathetic to the sufferings of others, I couldn’t possibly understand what they were going through until I experienced a life-shattering moment myself. My psychologist calls this “the moment you realize the world is not safe,” and although it has hurt me more than I can say, it has also made me more understanding to those who have experienced that same moment. I still recall meeting a school friend at the train station in our nearest capital city, years before my illness. She told me she had just visited her dad in the hospital, as he had leukemia. After our brief conversation ended, I rejoined my mother, sister and friends at the other end of the platform, thinking nothing of her troubles. In my mind’s eye, I can still see that girl, standing alone at the other end of the platform, facing a four-hour train trip home with only her thoughts as company. It literally never occurred to me that she may want companionship in her most difficult of times. She was fighting a battle that healthy me couldn’t possibly hope to understand. The sick me would never have left that girl alone. And I have made it my mission to reach out to as many of those in pain as possible. Some of my best friends are those who I’ve met in hospital and through chronic illness communities. I may have to struggle, and so may they, but we will not struggle alone. As I come to accept that this illness may be a lifelong companion, I also have to accept the experiences it has brought me, good and bad. I hope other chronic illness warriors can share their own stories and lessons, and cling to the good in a life that often seems uncertain and painful. For though chronic illness has changed me, the new, sick me is a far more understanding, kind and strong person than I ever was before.

Siobhan Simper

What It's Like to Have Severe Chronic Fatigue Syndrome

“Oh, so you have chronic fatigue syndrome (CFS). I know plenty of people with CFS. They can work part time, and need a rest now and then, but they really try to live life to the fullest.” The lady in the shop smiles knowingly at me. My throat begins to choke up. This is not my experience with CFS/ME. I am one of the hidden ones: the estimated 25 percent of people CFS/myalgic encephalomyelitis (ME) who are deemed “severely unwell;” that is, must remain at home, in a wheelchair, or in bed. We are your neighbors, daughters, brothers and friends. We may not follow the expected narrative of someone with CFS/ME — we are excluded from society by the very nature of our condition. And we demand not to be forgotten. Like most people, I had a vague notion of what CFS/ME meant before becoming unwell — overwhelming fatigue, general malaise, intolerance to exercise. Nothing could have prepared me for the reality of living with severe CFS/ME. In a timeframe of mere weeks, I slid from being a university student who volunteered at several organizations, to someone who struggled to attend one hour of class a week. I would cry in frustration, staring at my timetable, knowing that the assignments and coursework that were once completed with ease had become insurmountable tasks. My social life became non-existent. I spent most of my days in bed, staring out the window at the tree outside my bedroom. That tree became my comfort and friend. My precious violin, which I had played with since the age of 5, sat in the corner, gathering dust. My health progressively became worse, as my parents and I visited countless doctors for answers. The best I could hope for was a simple “I don’t know.” I was told there was no one who would help me. Meanwhile, I struggled to leave the house once a week. I wondered whether my struggles would have been taken more seriously if I was a man. Surely then I would not have been accused of being a drama queen. How was I to react when a well meaning stranger assumed my illness was one of mere inconvenience?  The idea of living without 24-hour care seemed like a pipe dream, so the suggestion of working with this illness felt like nothing more than a cruel joke. Doctors could not help me, as they seemed to be stuck in a paradigm of CFS/ME as no more debilitating than the common cold. Specialists in the nearest capital city would only treat those who were well enough to travel to them. Finally, after some ill advised “treatment” and medication from health professionals, I became fully reliant on my bed. The agony of being trapped in one’s own bed is impossible for an able-bodied person to conceive. My body slowly shut down, one faculty after another. Earplugs were in permanently, blocking sound which pained me; my blinds were shut to keep out the light which burned my eyes. Showering, or being showered, were impossible tasks: I could hardly sit up long enough to go to the toilet, so how on earth could I make it to the shower? My mother became my nurse. The impact of ill-informed views about CFS/ME are not only hurtful, but can much worsen the severe cases. If the medical professionals who treated me had recognized my case as severe from the very beginning, would they have prescribed such inappropriate treatment? Would I ever have had to stay in bed or been traumatized in the hospital, if doctors recognized the difference between severe and mild-moderate CFS/ME and treated me accordingly? If the nature of CFS/ME was better understood, no patient would have to struggle from “treatment” that harmed, rather than helped. Laura Hillenbrand, author of “Seabiscuit” and “Unbroken” and prominent figure with CFS/ME, once said, “Fatigue is what we experience, but it is what a match is to an atomic bomb.” When doctors assume I can work part time and live independently, part of me wishes it was true. Those with severe CFS/ME experience the full atomic bomb, the complete annihilation of every bodily function which tears our lives to shreds. The refusal of so many to accept our experience is akin to a denial of reality. Who wants to admit that this illness, which can turn a match to some people’s lives, can also cause such devastation to so many? This piece was not written to diminish the real and unique challenges faced by those with mild-moderate CFS/ME. People with severe CFS/ME will never receive proper treatment until their cases are more widely recognized. Next time you see someone who has CFS/ME, please don’t assume they are capable of doing things just because your other friend with CFS/ME is. Listen to their story with an open heart. The more who understand and recognize severe CFS/ME, the easier the lives of those who have it will become.