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We Cannot Continue to Let Doctors 'Gaslight' Chronic Illness Patients

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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

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When Your Illness Gives You a Complicated Relationship With Sleep

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I sleep a lot. Around nine hours a night. Except when I’m really tired; then it’s more like 11 hours. And I exist in a world where people say things like “Well, I got more than four hours last night so I’m feeling pretty good.” You can’t see my face right now, but imagine Jim Halpert, the character from “The Office,” staring directly into the camera as if he’s asking for confirmation that whatever just happened is crazy. That’s how I feel.

I’ve always slept a lot. As a kid, I got a solid 10 hours if I went to bed at bedtime, which I usually did because I was a sweet little angel, obviously. But my relationship to sleep got complicated when I got sick. That’s a familiar story to anyone with a chronic illness, I’m sure. Suddenly, sleep didn’t make me feel better. I didn’t reboot overnight and wake up free from annoying glitches. I woke up after 12 hours feeling like a college kid who went out four nights in a row and hadn’t gotten five straight hours all week. I tried sleeping less for a while to test out the hypothesis that too much sleep was messing me up, but discovered that if I cut it short my muscles would ache all day like I’d started Cross Fit overnight.

So I slept, but I felt frustrated by it. I still feel frustrated by it. Why do I have to sleep so much? And why doesn’t it ever work? It’s frustrating to spend so much time on something that is necessary, but woefully ineffective.

When I hear things like “I stayed up ’til 4 a.m. working on that paper because I got too drunk the night before and blah blah blah blah,” I want to grab these undergrads by the shoulders and shake them like Adam Sandler did to that grade schooler in “Billy Madison.” “You don’t have to feel miserable all the time! Don’t choose it!” That’s what I would yell at them. Because their bodies could actually feel good. And they wouldn’t even have to miss out on all that much to reach an effective balance that lets them sleep and study and go out. They could feel great. It’s possible for them. It’s not for me.

I’m trying so hard and sleeping so much and struggling to get myself out of bed this week. Not because I went out drinking, or stayed up late to write a paper. Just because my body can’t figure out what the hell it’s doing. Don’t get me wrong; it’s doing its best and I’m grateful for this body and its abilities and the fact that it tries So. Dang. Hard. But on weeks like this, when I sleep and sleep and sleep and everyday activities turn into Herculean tasks meant to test my fortitude, I get a little crabby. Maybe a smidge bitter. I get impatient with a culture that encourages healthy people to run themselves ragged and to complain that they’re tired. They don’t have to be tired.

There are health fairs on campus every semester that try to encourage students to listen to their bodies and take care of themselves. They have meditation sessions and massages, and they give out resources and information on sleep hygiene. I already know all that stuff. I know the tips and tricks and methods. I would be the most well-rested, self-caring healthy person, I’m telling you. I would take full advantage of being able to feel good. At least, that’s what I tell myself.

I guess I don’t really want healthy students to figure out they could feel amazing, like, all the time. Being tired is something we have in common. I should hold onto that. Solidarity is nice, even when they still don’t understand what it feels like to be can’t-get-out-of-bed tired for no discernible reason for so long you start to wonder if it’ll ever end. And even though I know that they’re saying “I’m so tired. Like, guys, so tired” right now, they’ll be out with their friends tonight or up until 4 a.m. watching “The Office” and I’ll be in bed, because I’m so tired, like, it’s unreal, guys. I’m so tired.

If you’re a healthy college student reading this, please know that I don’t really want to scream in your face (well, kinda). You do a lot and you’re doing your best. Forgive me. I’m just jealous of your body. For readers with chronic illnesses, do you feel the same? What goes through your head when you hear “I’m tired?” Tweet me @brightandweird.

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When I Tell My Uber Drivers About My Chronic Illness

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This is a story about Uber drivers. I will not be going into the politics of the sharing economy. I leave that to policy makers and entrepreneurs. I will instead talk about the heart and compassion I have witnessed in my Uber drivers, and what this has meant to me as someone with a chronic illness.

By nature my chronic illness is complex. ME/CFS (chronic fatigue syndrome) is something many people have heard of, but so few fully understand. To start, its name is wildly misleading, describing only one symptom of what remains a multi-systemic and debilitating neuroimmune disease. Because of this lack of awareness, when given the opportunity (and more importantly the energy) I will happily share my experience of living with the disease. I see this as my form of advocacy; as a patient population who largely do not have the capacity to get out of their houses or beds to conduct traditional advocacy, often a simple conversation is our only chance.

So, on more than one occasion I have shared with an Uber driver about my illness. Often this is simply because they have asked how I am, and I am not quick with a ready lie about how fine I am, how everything is great, and how I am just off to do normal people things, with completely normal energy thanks! And so I find myself telling the driver about the multitude of symptoms I experience daily, about how I recently had to resign from my job, how I feel exhausted every minute of every single day. I share about the totality of the loss of functioning ME/CFS can inflict and how it has derailed my life. I apologize for the short ride, explaining I can’t walk a regular distance, and how Ubers at least afford me some freedom to leave the house.

And the truth is, every time I have shared my story in this way these drivers have been the perfect listeners.

They have been curious, understanding and courteous. They have expressed concern and dismay. They have attempted to understand the complexities of the disease, openly expressing their prior ignorance. They have offered their condolences. And they have done so in a heartfelt way that has felt more genuine and kind than I have experienced with many others I know well. One seemed genuinely distressed at my situation, professing his sympathies over and over on the short ride. These drivers have had a better bedside manner than many doctors I have seen, leaving me with a
smile and a warm feeling as I climb slowly out of their cars.

Talking about illness can be hard. It can feel as though you are defending your sickness, your disability, your inability to work. You can feel after an in-depth conversation that the other person still doesn’t get it, and the thing is, you have to accept they never will. As hard as someone tries, they will never fully appreciate what you are going through, and that’s OK. But my Uber drivers have tried. Complete strangers, they have listened to me without judgment, and they have cared. Say what you will about the sharing economy, but its sharing element has shined through for me.

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Why I Don't Dream of a White Christmas as Someone With Chronic Fatigue

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It is apparent in my voice as I look up at the sky after the fairly hefty snowfall we had a couple of days ago. I’m not quite sure if I’m talking to the Snow God. I’m quite sure that some cultures believe in a Rain God. But a Snow God? Honestly, I would have to look that one up. Where I live, snow does not usually come until the very last day of October. Sometimes, we get treated and the snow does not come until [gasp] the end of November! Extremes of cold and heat are very, very stressful to someone who is chronically fatigued, or to someone who is immunocompromised.

There are wonderful but greatly misinformed people living in year-round greenery who wish so fervently for a white Christmas. Snow often heralds below freezing temperatures. To Canadians, that means below zero degrees Celcius. With a wind chill, even lower. To Americans, that translates to 32 degrees Fahrenheit. By Christmas, temperatures where I live drop to approximately 25 degrees below zero (-13 degrees Fahrenheit). To people with chronic illness, pain, and depression, snow marks the beginning of an upward battle of extra energy expenditure.  

For example, cars and trucks here are equipped with block heaters so they can be plugged in to warm the engine to make them easier to start. I could technically plug my truck in all night and have a 95 percent guarantee that my truck would start for work in the morning. The power bill, however, would be higher. So not only did I have to go outside for much of the winter in minus 25 to 30 degree Celcius when the weather is dark to plug in my vehicle for an hour before work, I had to stumble around in the dark with my huge boots, pajamas and any coat I could find to throw on. I took off my mittens and shoved the car plug into the receptacle plug as the cold air stung my bare hands. I had to crouch down, waiting for the sound of the block heater. I struggled to my feet, and then stumbled back to my home. By the time I got ready, put makeup on, started the vehicle and drove away, exactly one half of the energy (mental and physical) I could have used for that day was lost.

I went from freezing cold, to sweating in my vehicle, to freezing cold, to arriving at work sweating. Eighty percent of the time I had a migraine at this point. I kept a mini-pharmacy in my locked drawer. Along with a bottle of whisky. I’m joking about the whisky. Ten minutes before the doors to the office would open, I would sit on a toilet in the bathroom stall and cry.  Crying also is an energy expenditure. 

By 2 p.m. my brain fog was comfortably nestled in, and so was my migraine headache. I had a migraine every day. Everyone else had to do the same thing I’d had to do that morning and they were prancing around the office, eating bananas and talking about their trips to Machu Picchu. Then I had to go home — again from a warm, sweaty environment to a freezing cold one — to another warm sweaty environment. I was alone and defeated. I ate chocolate and wished for alcohol, but both my mind and my body had left me there on my couch, like a helpless infant, unable to do anything.

I’ve had my fair share of early mornings, and also I’ve lost count of the times I’ve been stuck in the snow. And just sat in the driver’s seat, crying like a baby, wailing “I can’t dooooo thi ii sss…”, and would snort my snot back up into my nose before it got a chance to turn into an icicle. I never had the strength to push my pickup truck out of a jam all by myself, especially at 6 p.m. when everybody was heading home after work. This was, of course, before cell phones were something everyone had. My eyelashes would start to freeze shut like the proverbial Sam McGee’s (seriously), as I tried to remove the ice that was accumulating on my windshield like a smooth, impenetrable, slightly bumpy second windshield with my useless credit card because I’d forgotten to bring an axe-like instrument. Or just an axe. Actually, the no axe was good because I’d have destroyed my windshield and possibly other cars in the process.

After being out in the cold for awhile, my vehicle would no longer start. That is when I would have to take a long walk to a phone booth and call someone to rescue me. By this time, whoever was on the other end of the line must have felt like a 911 operator. I’d blubber into the phone “I just wanna ugh ugh…sniff…snifff…get home…please.” The roadside assistance operator would tell me to calm down, get me to tell her where I was, and what the problem was. I would tearfully respond, saying “They locked me out of the building. I can’t get back into work. I’m freezing. I don’t know what to do.”

Eventually, I climbed into the tow truck that arrived. It smelled like Pennzoil and cigarettes inside. If it had also smelled like cat piss, I wouldn’t have given a damn. It was warm. My vehicle was towed out of its rut to my home and given a new battery. Those events may have occurred in the opposite order, I don’t remember. I gladly paid, went inside and collapsed.  

I didn’t go into work the next day because all of my energy had been expended the previous day. Because “I’m too tired” is an unacceptable excuse for not showing up at work. I have had far too many winter experiences like this that just sucked the soul right out of me and left me sitting on my bed wondering who I was for several hours.

Winter is pretty in pictures and in the movies. I wonder if the guy who wrote “I’m Dreaming of a White Christmas” had a lovely green Christmas with palm trees and a swimming pool. So now you understand why I don’t go running outside at the first snowfall with a red scarf hastily affixed around my neck, trailing in the breeze behind me, with the swelling of orchestral music in the background, just to open my arms and stick out my tongue to catch the first of winter’s flakes. God, I was never any good at fiction.

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8 Things I Wish People Understood About Chronic Fatigue Syndrome

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October marks my second year of dealing with the effects of chronic fatigue syndrome (CFS). I have learned a lot on my two-year journey and my life has changed in ways I never could have imagined. Below are some things I wish more people understood about those with CFS:

1. The illness is real. 

I will admit that before I developed CFS, I did not understand it at all. Even today, I think to myself that the only way to know the magnitude of this illness is to experience it. I know everyone gets tired. I understand that it is hard to imagine feeling exhausted all day, everyday, even after days of rest. I know that the medical community cannot figure out a sure-fire diagnostic tool, nor can it provide any salient answers as to the cause of CFS. It’s mysterious. But that does not mean that it’s not real. Believe me, and the millions of people suffering, that it is real.

2. It’s not “all in my head.”

Unfortunately, I hear this one a lot and it’s often used as a dismissive way to minimize the symptoms I experience. Now, these folks may be right in some sense of the term because the brain is so immensely powerful and the answers to CFS may very well be found in it. But it’s unfair to insinuate that I am bringing this illness upon myself in some way. CFS is a physical illness and affects many aspects of your physical and mental well-being, from the endless fatigue, brain fog and memory problems, to the joint aches, nausea and night sweats. It is not just feeling tired, and it’s not a figment of my imagination.

3. It’s easy to feel invisible.

I have good days and bad days. Some days I knowingly push myself too hard because I want to feel some semblance of my old normalcy. I pay for those experiences in the days and sometimes weeks to follow. Please do not assume that because I went out to dinner with my closest friends this week that I am miraculously fine. What you do not
see is the fallout from that exertion.

4. Check-ins are a lifesaver.

Being sick with a chronic illness is not like catching the flu or even recovering from a major medical problem. By its very name, a chronic illness is long-lasting and
ongoing. The friends and family who continue to check-in on me from time to time have been a lifeline. The power of having someone close to me ask, “How are you?” and truly care to listen to the answer has been invaluable and has seen me through the toughest times.

5. It’s exhausting.

Now your first response to this may be “of course,” but allow me to elaborate.  Think back to a time where you completely overdid it. Maybe you pulled an all-nighter to write a paper, burned the midnight oil to finish a work project, or just stayed up all night binge-watching “Game of Thrones.” In any event, think back to how you felt — limbs heavy like a weight had been placed on them, mind just slowly firing, that feeling like you need six cups of coffee to be human again.  It’s no exaggeration to say that people with CFS feel this way most of the time, even after ludicrous amounts of sleep and rest.

6. It’s not helpful to comment on my looks.

For me, a big part of my CFS has been gastrointestinal problems. I am constantly nauseous. I have to force myself to eat. As a result, I lost 25 pounds. Please, when you know someone has a chronic illness, do not tell them, “Well, you look great” or “But you look healthy.” At my worst, I weighed less than I did as a 12-year-old child. I get that I may not appear “sick” on the outside and that our standards of beauty are such that apparently being underweight on my BMI is “looking good.” But when someone tells you they are dealing with a chronic illness, try keeping comments about the way that person looks, good or bad, to yourself.

7. It’s OK to be genuinely curious.

There is often a lot of focus on things you should or should not say to someone with an illness. But I have always found that the best conversations are those with people who genuinely care to understand not only what I am going through, but also the specific frustration felt by those suffering with CFS relating to the medical uncertainty of it. If you’re curious to chat about the mysterious nature of the illness, the lack of a miracle cure, or seek to better understand what I’m going through, I’m interested in discussing because it’s nearly always on my mind.

8. There are a lot of us.

According to the Center for Disease Control, more than one million Americans have CFS, which is more than those who have multiple sclerosislupus, and many forms of cancer, and tens of millions more have a CFS-like condition. Because diagnosing this illness is so challenging, I’d imagine that the actual number is much, much higher. We need comprehensive research to uncover the mysteries of this illness, and we need to bring awareness to a broader audience of people about CFS and what it means for those who have it.

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Why I'd Like to Change the Name of ME/CFS to 'Gray Area'

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“What is your disability?”

I have had myalgic encephalomyelitis since I was in high school — almost 20 years now. Of all the questions people ask about the nature of my illness, this is the question I hate answering the most. You would think the name would be the most straightforward of all; but when professionals have given your condition a name that is practically pejorative, the easiest question may be the hardest to answer accurately.

The medical community in the United States calls my disability “chronic fatigue syndrome,” a name that belies the exhaustion and inability to function that patients face after even mild exertion. Even many doctors get the wrong impression when they hear it: “depressed,” “drug-seeking,” “attention craving,” “lazy” and “unable to cope” are some of the conclusions that otherwise reputable doctors have jumped to when I mention my diagnosis.

In my personal life, I choose to use the term that is widely used outside the US — myalgic encephalomyelitis — but doctors don’t appreciate the “attention-seeking” aspect of trying to change your diagnosis from its “accepted” label.

As outlined in Ryan Prior’s movie Forgotten Plague, a bad name can become a vicious cycle for a misunderstood and underfunded illness. Experts insist that a better name cannot be found until the cause of ME/CFS is discovered. But due in part to the ridiculous name, ME/CFS is not taken seriously enough to get the funding it needs to find a cause. Without naming a cause, the name won’t be changed… And on it goes.

Patients have lobbied for a name change practically since the current one was proposed. A couple years ago, it seemed as though we would finally get our wish when a new name was announced: systemic exertion intolerance disease. The backlash was immediate. “Exertion intolerance” sounded a lot like laziness to the general public. Of the dozens of patients and doctors I know, only one patient has adopted the new name.

“What is your disability?” How do I answer a question for which there is no short answer? While I am far from the first frustated patient to do so, I’d like to propose a name of my own, one that encompasses the effect ME has on nearly all areas of my life. I would like to change the name of my disability to “Gray Area.”

As ME patients go, I have maintained a relatively high level of function. I work (half days), drive, and can perform most of my daily personal care routine without help. On a good week, I can even socialize with friends for an hour or two. My life doesn’t look “normal” to healthy people, but I know my level of functioning is enviable to many others who share my diagnosis. It’s a “gray area” between disability and being able-bodied, so much so that I can even fool myself until the “crash” inevitably occurs.

I am grateful every day for the level of functioning I have achieved, but it’s a “gray area” when seeking validation from medicine or the law. There is insufficient proof for me to receive disability benefits, despite my inability to consistently work even 20 hours a week. The judges don’t care that working more than a half day makes me too exhausted to eat supper when I get home; as long as I can technically drag myself through a day without an ambulance being called, it doesn’t matter whether I lose everything else. I have asked professionals what I should do — take on more hours while sacrificing my performance both on the job and at home? Or take a smaller paycheck in order to ensure that I can be more reliable for my employer and myself? I’m told it’s a “gray area.”

How do I survive with so little money coming in? Honestly, I am held up by the sacrifices of my loved ones. If it weren’t for my parents and husband, I would be homeless or worse. As a part-time employee with many gaps in my work history, I will never pay all my bills or sign for a loan by myself. It’s a humbling “gray area” knowing the only thing standing between me and total poverty is for my loved ones to maintain their financial security in the absence of my own.

Socializing with ME happens infrequently. Even talking on the phone or texting is often too taxing after work. The unpredictable nature of my illness means I have to cancel or change plans more often than not. My social circle grew smaller but much closer after the onset of ME. I love the friends who understand when I have to change our night out to a Netflix date at the last minute; they are willing to spend time in the “gray area” with me, which makes it a far more bearable place to be.

“Gray area” all too accurately describes my medical care. There are few accepted treatments for ME, and none of them work reliably for all patients. I ask for treatment options, and I am told nothing can make me do better than I am currently. Yet I am never well enough to have financial security, children, or many of the other things my doctors take for granted in their own lives. “Why can’t I get help?” I ask. “You’re in a gray area,”  they say. I am denied referrals for both mental and physical problems because someone out there is always sicker, and the system dictates that all of us must fight for the same openings. When you have an illness that doctors don’t understand, there is simply not enough care to go around.

The only way to fight the “gray area” is to find color in the little things. Getting my graphic design degree in school, I gravitated toward color combos of bright purple and lime green. I take too many photos of my pets and the outdoors. My favorite playlist is all happy songs. I cook with as many bright fruits and veggies as I can pack into a meal. I fight like hell for recognition of my disability so that we patients and our loved ones can move out of the “gray area” and into a cure. I won’t give up on getting my technicolor life back. Until then, I’ll color outside the lines of that “gray area” any chance I get.

Photo by Thinkstock Images

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