themighty logo

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

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‚Ķ

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‚Ķ 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‚Ķ and do you know what¬†it is? It’s the damn¬†name ‚ÄĒ 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 ‚Äúchronic coughing syndrome.‚ÄĚ

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‚Ķ 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‚Ķ 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 ‚Äúdepression,‚ÄĚ ‚Äúanxiety,‚ÄĚ ‚Äúanti-depressant‚ÄĚ and ‚Äúcounselor‚ÄĚ 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‚Ķ

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)