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Why I Think 'Chronic Fatigue Syndrome' Is the Worst Name Ever

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Imagine the following conversation…

Friend: Heard you weren’t feeling well lately?

Me: You could say that.

Friend: So you’re just tired all the time?

Me: Yeah, and a few other things…

Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me a week to turn around and then I made the mistake of going on a bender the weekend after. You know how that goes, and then last week I ended up with a flu and it feels like it’s been a month since I felt normal, you know?

Me: I can relate to that.

Friend: I remember last year there was like this three-week period where I couldn’t sleep past 5 a.m.
Man, I was so bagged at work. You don’t even know…

Me: Yeah, that sucks, but it’s a bit different.

Friend: How so?

Me: Dude, I have chronic fatigue syndrome.

Friend: You know, I wondered if I had that and then I had some bloodwork and turned out my hemo-something was low. Took some iron and I was good as new! Have you ever had your blood tested?

Me: Yes.

Friend: Hmmm. I hear lots of people have luck with acupuncture for fatigue. I’ve never tried but I keep meaning to. Why don’t you try that?

Me: I’ll keep that in mind.

Friend: You’re not like (whispering) depressed or something?

Me: (Forehead slap)

Let’s clear the air about a few things here… For one thing, I love my friend. He’s a kind and well-meaning friend, and I’m not being ironic. For another, I am not running down depression or any other mental illness as a diagnosis. And lastly, as irritating as it may be, I totally understand why conversations like this are inevitable… and do you know what it is? It’s the damn name — chronic fatigue syndrome. Worst. Name. Ever.

Why? Because upon hearing these words, everyone and their dog feels compelled to:

1. Commiserate with their stories of tiredness. 

I get it, and I’m not belittling anyone’s experience. It’s true we have all been tired at times, some extremely so and some for long periods of time. It sucks. I understand. I guess why I find this slightly irritating is that someone with lung cancer would probably never have to endure a lengthy
commiseration about their friend’s cough. Their friends wouldn’t dream of it, because it’s not the same thing. I can only blame the illness’ name for my friend’s lapse in judgement here, and he might do the same to someone else if lung cancer was called “chronic coughing syndrome.”

2. Offer an alternative diagnosis

Everyone with a smartphone is a doctor these days! Maybe you’re pregnant? Have you ever thought
you might have multiple sclerosis? Lupus? Lyme disease? Thyroid disorder? Iron deficiency? I’ve heard them all. I can only assume people do this because the name CFS is somehow not a convincing enough of a name for a multi-faceted illness such as this.

3. Offer medical advice

I’m sure offering unsolicited medical advice is not limited to CFS. The reason this irritates me slightly is that after four years of living with this illness, does my friend really think I have never had a blood test? Or considered an alternative treatment? Or given any thought to what might be causing this? Does he really think he has a better idea about managing CFS than I do? I’m being too hard on the guy… He probably wouldn’t be so inclined to offer advice if the illness was more frequently referred to systemic extertional intolerance disease (it is).

4. Make awkward references to mental illness

I’m just going to put this out there loud and clear… I do not have depression. I have experienced anxiety unrelated to CFS. It sucks big time. I have talked to a counselor who I would see more frequently if I had unlimited time, funds and babysitters, and there are no commonly prescribed meds for CFS. Oh, and “depression,” “anxiety,” “anti-depressant” and “counselor” are not swear words, and they do not need to be whispered for any reason I can think of.

For the record, there are a number of alternative names for chronic fatigue syndrome that I occasionally offer as an alternative, but, to be honest, myalgic encephalomyelitis is really hard to say and confuses people. As for systemic extertional intolerance disease, well, it’s neither catchy nor memorable nor currently accepted as a clinical diagnosis in this country (Canada). And conversations where I do offer these names inevitably go down something like this…

Me: Myalgic encephalomyelitis.

Friend: Huh?

Me: Myalgic encephalomyelitis.

Friend: The who said the what now?

Me: My-al-gic. Enceph…

Friend: I thought you had chronic fatigue syndrome!

Me: (Forehead slap. Cue annoying conversation)

Originally published: September 1, 2016
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