We Can Do Better.

I noticed an article in The New York Times recently titled “World Health Organization Urges More Care In Naming Diseases.” In early May, the WHO issued new guidelines for naming infectious diseases in an attempt to avoid damaging inaccuracies and stigmas that often the name alone can cause. They emphasized caution and symptomatic detail when choosing one; no animal names like ‘Swine Flu’ or peoples names like ‘Lou Gerrigs Disease.’ The new guidelines are a proactive attempt to prevent “Unintended negative impacts by stigmatizing certain communities or economic sectors.” They also mentioned that “The best practices apply to new infections…for which there is no disease name in common usage.”

Of course I read the article expecting to see CFS as a prime example of how damaging the effects can be from a poorly named disease. When Myalgic Encephalomyelitis was renamed “Chronic Fatigue Syndrome” in the early 80’s, it solidified an environment of dismissiveness, doubt, and critcism. A new stage was set: everything from the publics skepticism to the medical establishments cold shoulder were put into place, and little has changed in 30 years. Now if you had the misfortune of being sick with this disease, you were going to have two battles to fight.

I don’t just hesitate to say those three words out loud, I feel anxiety about it. Sometimes in doctors offices, I feel shameful saying it out loud, as if I’m confessing to how many packs of cigarettes I actually smoke each day. When I’m forced to say it, I swear I can hear any perceived validation deflate out of the room like a popped, zigzagging balloon. The words don’t hold any water on their own; they necessitate explanation that ends up sounding like defense. The words “Chronic Fatigue Syndrome” are not only misleading and insultingly trivial, they sound like a hypochondriacs failed attempt at making “tired” sound serious. And that seems to be the general consensus–that this is a “disease” where people simply feel sleepy all the time. Sleepy is for kittens and babies, and the primary symptoms of this are far, far beyond the bone crushing fatigue we experience. But this is the problem with labels, namely inaccurate ones. There is damage in what the words imply and even more from what they fail to say.

Here’s an example. A few months ago, the Institute of Medicine released a 600 page report devoted wholly to examining and better understanding CFS/ME. The committee not only provided new diagnostics guidelines and better disease management, it acknowledged the severity of the disease and put to rest the idea that it is at all psychological. Surprising many, they acknowledged the issues stemming from the name CFS and suggested a new one: Systemic Exertional Intolerance Disease. (SEIDS) It doesn’t exactly slide off the tongue, but it does finally address a discerning symptom of ME, which is the adverse reaction, down to a cellular level, to even mild exertion. This is far different than general fatigue. An exhaustive study like this one from an Institue with no previous involvement with the disease is a huge step in the right direction. The validation it provided for many sufferers was big, and the recognition of the staggering lack of science and funds to support it will presumeably apply more pressure at the federal level for a major increase.

I happened to read about the IOM’s report and name suggestion from NPR News, which I follow on Facebook. When I saw the hundreds of comments underneath the article I decided to look, and they weren’t anything out of the ordinary. Out of hundreds of responses, most of them were like this:

.
Thanks, Steph. I’m cured!!!!
.
Totally! It’s like I’ve never met anyone with Diabetes who can eat copious amounts of sugar. It’s obviously bullshit!
Em, you don't have this.  -Mary
Em, you don’t have this.
-Mary
.
This person actually doesn’t believe in Carpal Tunnel so I don’t know where to go from here.
NOPE!
Hi Brianna, NOPE!

I know it’s a leap to project the reactions of a few Facebook commenters onto the general public. But in this case, these attitudes are not at all the exception. They represent a ubiquitous perspective most people have, whether online or in person. And maybe it’s redundant to say, but this is simply not a normal response to sick people. It just isn’t. It’s easy to see why sufferers hesitate to say the name out loud at all. Look at the environment we’d be entering into.

So, is this of any consequence? Does it really matter that the general public understand a disease? Not really, besides the demoralizing and crappy way it makes already sick people feel, no, it doesn’t. These people aren’t doctors, (most of them) and so who cares really? Besides basic human kindness, is this of any real concern?

The thing is, yes, I think so. Namely because this attitude pervades more than an uninformed public. This lack of concern, eye roll response travels all the way up to the federal level. Or maybe it trickles down from it. It’s hard to say anymore. Irregardless,  by now the two are in some osmotic relationship– One fueling and informing the other. And when this is the attitude at a federal level, the effects are far more detrimental and consequential. $5 million allocated toward research for the last five years from the NIH is a detrimental effect. No cause, no cure, and zero FDA approved treatments are all the result of a disease not getting the attention it requires. Ironically, people who are sick with this don’t want attention at all. They just want to get better so they can have their lives back. But the shot at finding a cure relies heavily on the desire to find one and fund the science for it. When the perception of it is so casual and misinformed, it contributes to negligence– it prevents that possibility of a cure the way it has for the last quarter century.

I can’t help but wonder if the same outrage would exist from people if the disease went by its original name: Myalgic Encephalomyelitis. Would people scowl at its existence and call someone with the diagnosis a lazy-ass complainer who just needs to eat better? Would they judge them for being too sick to work? No, because those responses are not to a disease called Chronic Fatigue Syndrome. They are responses to feeling fatigued; one is fire cracker, the other is an atomic bomb. I realize all of this may seem a little petty. It’s just a name and there are bigger fish to fry when it comes to this illness. But I cannot help but wonder if what’s fueling the size of those fish is at the core, a simple misfortune of a name. It’s crazy to think that a label could do such harm or have such far reaching effects, but I don’t doubt it in this case. The evidence is right there, in this abnormal anger healthy people have against sick people as if they’ve chosen to be sick.

The point is not to harbor on issues I cannot change and I know that. Forward is the only direction now. But there’s such a lesson here in accepting things at face value and the harm it can do when we trust that we know better, before knowing much at all. It’s not just a poor social stigma we’re dealing with. It’s having a totally debilitating disease which costs the country roughly $18 billion a year in lost productivity, and the lowered chance we have at getting better because it just doesn’t appear or sound serious enough. This is where labels have much larger implications than just confrontational dialogue and ousting sick people. It’s bigger than that.

It makes me think of the way I perceive things and other people in my own life. How easily I make up my mind sometimes, one way or the other, about all kinds of things. I think of hearing or reading about issues and people and how fast and automatic a decision or feeling arises inside me. Sometimes I’m proud, thinking I know better about something, even when I hardly know that much at all. I think, if I never would have gotten sick when I was nine, were I still a healthy, functioning person 30-year-old, quick thinking and totally capable, and I heard of a “disease” called “Chronic Fatigue Syndrome,” what conclusion would my mind jump to? What feeling would I get? If all I had to go on were those three words, given that I wasn’t a doctor or otherwise well-versed in diseases, what would that label say to me? That name in its own twisted way, appears to say everything, enough for people to hold up their hands and say “I’ve heard enough, thank you.” Enough to feel decidedly one way or another without hesitation. Quick decisions and judgments like that do harm for all kinds of people with respect to all kinds of issues. I think we can learn from this one, and do better in the future across the board when it comes to making up our minds but remaining strictly at the surface.

Illness is not something to undergo alone, and anyone who has experienced it long-term will tell you that. When people email me about their families dismissing them, doctors referring them to psychiatrists, or marriages that crumble because someone is suffering from a disease with so few options and a world that just doesn’t quite “buy” it, I feel angry and discouraged. Mostly because I believe in the good-heartedness of people and I know we’re better than this. We can do better. Turning your back on someone who is sick is more than insult to injury. It causes its own tragic pain, separate and worse than the physical kind. It’s a new kind of loneliness, in a time you need people the most. After twenty years of being sick, the last five being the sickest, the hardest and most demoralizing part is battling something that so invisible to everyone else, all the while your whole world is crumbling.

The truth is even though it’s still massively lacking, there is more research than ever going on, and thanks to recent reports like the IOM’s and the Pathways to Prevention, pressure is building to invest more into solving this thing. My hope is that in the meantime people will be at least a little diligent before ousting an entire population of sick people as hacks. I hope if you’ve got major beef with the illness, you haven’t just heard the name and stopped there. To learn more about it, Cortjohnson.com is a great resource with vast information, including current and future studies and well-written dictations about their meanings.  To those who are sick and discouraged, I hope you’ll read this and have faith that you’re not alone and that the answers will come. Progress is slow but it’s moving. Until then, please don’t lose hope. Worse than being sick is the thought that our life is over if we never get better. There is value to gain in all of these experiences, whether you’re sick defending yourself or dealing with someone who’s sick with something you don’t understand. But try and remember we’re all brothers and sisters here. We need each other. Maybe the history and politics of this disease hasn’t been our kindest hour, but we can still turn it around, even if it’s one less person casting judgment or turning someone away. As is the case with all social change, it always begins with one. We can all do better, and I’ve never lost hope that our future will be far brighter than our past.

Labels and categorizing are important, they exist for a reason. But in the case of CFS, and the WHO’s new guidelines for naming disease with caution, help exemplify the power and possible harm of labels. They must be chosen wisely. The  CFS label was not, and it did an injustice to millions of disabled people. But it doesn’t have to stay that way. And despite how long and twisted the history is, it’s not ever too late to turn it around. Slowly but surely, I believe that change has begun and we’re on the cusp of something major. Despite my bad days, I believe in the awesomeness of humankind. We can do better. So let’s begin doing it now.

Health, Happiness, Better.

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14 thoughts on “We Can Do Better.

  1. Mary,
    I’m late reading this but holy shit did I get angry seeing those comments.. As I do with anyone who expresses their ignorant opinion publicly on Facebook or anywhere for that matter. To me, so much of this is just not being educated on CFS or SEIDS. The way people can assume so much about such a widespread illness is sad. Goes to show so many people would either have to personally experience it or know someone who is truly experiencing it in order to even begin to empathize.
    I completely agree about the name CFS. I once went to a clinic and had brain scans done for another reason but they told me I was prone to CFS. Clearly there is something chemical & genetic happening. Why would anyone want to choose feeling bad all of the time?
    i’m glad you can still see the bright side and how far science/research has come. I hope people can open their minds and get rid of this ridiculous stigma.
    Love you

    Liked by 1 person

    1. Mia! Thank you for your words. The stigma is a huge problem, and I do think the name has a lot to do with that. I find it hard to believe that people would put up a fight and be angry at those who were sick constantly and the name of the disease was myalgic encephalomyelitis. (That’s the original name) anyway, these stigmas exist in other areas too, especially with psychological issues like depression and anxiety. All we can do is help bring awareness and hopefully have a more open conversation about it where others know that we aren’t seeking attention for being sick nor do we want Pity, we just want to be believed and supported, the way any sick person would. You have always been so encouraging and supportive since I met you, and you understand the ins and outs of this complex disease really fast–most outsiders don’t. Thank you for your insight and continued support and for seeing past the politics of this disease and simply being a positive and helpful friend to rely on. This community needs more people like you :) miss you! Love, mare.

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    2. Dude, thank you for your words and your continued support and encouragement throughout all of this. From day one you seemed to understand the boundaries and limitations of this disease on a deep level and have shown total compassion about it without having to try so hard. That is rare. It’s often a struggle to get people to see, hear, or understand us but you were bright and willing to do that from the first time we ever talked about it, and it was such a relief to meet someone so awesome who didn’t require so much explanation, or worse, defense, on my part. You were and are open and accepting and kind, and that’s a gift dude, and why I love you so much! Let’s hang soon, I miss you. And congratulations on being an aunt x 2!! See you soon,
      Mare

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  2. I think part of the problem is that like so many other ‘labels’ it is used far too often by people it does not apply to and harms those actually suffering, how many times to people claim to be depressed because they are having a bit of a crap day yet have no idea what the truth of that illness actually is. I work on a check out in a supermarket and have a bad back, on bad days I cannot help people pack, but when you say you have a bad back they roll their eyes and say they have a bad back as well, (I have actually been called fat and lazy by one customer I could not pack for) it is only when I mention two spinal surgeries the second of which was a spinal fusion and the fact my back was basically bolted back together at the bottom that their attitude changes. Changing the name will not change anything until as a society we become more empathic and realise not all illnesses, injuries and diseases have visible symptoms.

    Liked by 1 person

    1. I mostly agree. People are hard pressed to empathize when they can’t “see” the suffering outright and just have to trust a person when they say they are, which shouldn’t be he case. However in this instance, there has been SO much misinformation and wrong assumptions based purely on a trivial, inaccurate name, and that is encouraging a lot of the negative dialogue and hostile opinions, which I DO believe would improve greatly with a more appropriate name. But I agree, in general we could do much better in terms of “believing” someone when they reveal they’re in pain, and being helpful to them instead of downright dismissive due to skepticism. If a customer says that agin, punch them in the face. It’s highly effective. ;)

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  3. For a long time I never really ‘got’ the debate about the name. it’s just a name – no matter what it’s called my life sucks!
    But you are so right – it really influences everyone – from the doctor to the horribly uninformed people on facebook. Those comments were really upsetting.

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    1. Right. I used to feel that way too actually. And I don’t mean to argue here that the problem is assholes on Facebook and the Internet at large– those will always exist. In this case the implications of those opinions are more serious up to a federal
      Level. Maybe laws won’t be immediately changed, but even changing the dialogue so that it revolves more around support, solution finding, and a genuine interest in fixing something that CAN be fixed, is a step in the right direction. Most people will never know what the actual bio markers of CFS are (yes, they exist contrary to widespread belief) or how debilitating it actually is. But eliminating such widespread “disbelief” will at least help transfer the focus to more solution based opinions and not doubt and anger at people in real pain. Thanks for reading I’ll hope you’ll be back :)

      Liked by 1 person

  4. Beautifully stated Mary! The depth of insensitivity that is out there is only matched by some of the remarkable people I have “met” online. When my sister first became ill with CFS/ME/SEID 25 years ago it was a tragedy that I didn’t really understand. Now that it’s affects me, I fully get how completely frustrating it must have been for her. The Chronic Fatigue Syndrome name seems to automatically allow others to make a judgment about you, something never see happen with other severe illnesses. Hopefully that’ll change with the new name over the next few years. Thanks for writing so eloquently and speaking up for those of us who need it!

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    1. Thanks dude.. Happy to have you as a reader, and sorry to hear about your sister. My mom has the disease, and in her early twenties started to exhibit many of the symptoms, especially migraines, which started to become debilitating. She aggressively sought out many doctors and different types of treatments (western, eastern, homeopathic..etc) And she quickly fired the ones who told her she was simply stressed. She was diligent about getting it under control quickly, tackling it within thenfirstbear and a half and she recovered. At any rate, there’s no doubt for of the genetic component, so I’m eager to see the science reveal more answers on that front. Anyway, I hope your sister knows she’s not alone, and regardless of attitudes progress is being made. Hope you’re well and I’ll hope come back to the blog. The more voices in this effort the better. Rock on. ;)

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  5. Systemic Exertional Intolerance Disease. (SEIDS) makes a whole lot of sense to me! I have been very lucky with most people I have come into contact with, a surprisingly high number of them have known others with this condition and have an understanding of how much it sucks. I have actually had a lot more disbelievers when it comes to my Tourettes Syndrome

    Liked by 1 person

    1. I’m happy to see and read that. In terms of how this was treated in the eighties, we’ve certainly come a very far way. There is still work to do but I have faith we are the generation that can change it. I cannot understand how in the HELL someone wouldn’t believe Tourettes. Christ.

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