It's all in the NAME

[Nielk]

In the beginning of my illness that started 7 years ago, when friends would ask me what's wrong with me, I would try to explain CFS to them and this would be answered by blurry eyes and silence. Over the years, I have lost contact with most of my friends probably more my fault then theirs because I couldn't socialize anymore. I didn't see them at the synagogue, weddings and get togethers because I couldn't attend. Even my neighbors who I was friendly with, have not seen me for a long time.

When I do talk to someone new, I don't mention that I am ill anymore. I have learned that it is counter-productive. They just don't understand. I don't know anyone else in my community who suffers from this illness. They might be there but they are probably hiding for the same reason as I am.

This past week-end I happened to meet up with some old friends and they wanted to invite me to go out with them. I responded with "I have a bad migraine headache, so I really can't but thank you". I got so much empathy from them!! They UNDERSTOOD
"migraine headache" because someone in their family also suffers from them and when I told them that I chronically suffer from them (which I do) I can see the empathy they had for me and kept wishing me well.

In my whole seven years of suffering this was the most empathy I ever encountered.
It is because they understood my pain and my diagnosis.

I think from now on until they have a name change from the outrageously ridiculous
"chronic fatigue syndrome", I am going to use "chronic migraines". Even though this is only one symptom out of many that I suffer from, it is one that most people can understand and empathize with.

 

[Carrigon]

The name should have been changed twenty years ago. I get the same reaction from everyone. You dare to say Chronic Fatigue, they look at you like you're a nut. But anything else, they understand.

 

[xchocoholic]

Sad but true ... I had level 4 melanoma once and was totally shocked when my doc actually acted like she cared. I'd been seeing her for several years after I came down with CFS/ME and never got the impression that she understood my illness.

It's not just other's who are confused by this illness. For 16 years I thought my legs were too fatigued for me to walk and that's what I told people when I HAD to sit or get a motorized cart. It turned out to be from gluten induced neurological damage. All of the sudden, one year after eliminating gluten, it was gone ... no CBT or happy thoughts were involved ... ; ) ... well, at least it appears to have been from gluten damage. Neurological problems are common for people with the DQ2 gene and my symptoms fit the gluten ataxia diagnosis. BUT I eliminated other possible toxins at the same time ... more and more I see others who've just eliminated gluten and it wasn't enough.

A few years ago, I started telling people that I WAS diagnosed with CFS but found out that I'm really an undiagnosed celiac with gluten damage and nutritional deficiencies. Then, if they're interested, I go on to tell them how much better I'm doing ... but ... I'm not healed just yet ... It's amazing how people can relate to my story ... tc ... x

 

[SOC]

I completely gave up using ME/CFS with the unknowledgeable. If words are about communication, then ME/CFS is the worst "word" invented. It only causes confusion and miscommunication.

I now use "persistant HHV-6 infection" (which I have) or "idiopathic neuro-immune disease". Admittedly, both still mystify people, but at least they don't think they know what it means, lol. They're also more willing to ask questions I can answer with real descriptions of what it feels like to have a neuro-immune illness.

My daughter tends to use "dysautonomia" at college to explain why she can't do as much as other people do or why she has to sit or lay down sometimes.

 

[WillowJ]

yes, the name is important! good strategies

I had a doctor who once he checked with either the CDC or Mayo Clinic for what CFS was, and after I mistakenly told him how little I was able to do, treated me like a total ninny and never wanted to much investigate or treat any of my symptoms (except he did prescribe a med for IBS, which I've not actually been diagnosed with, and which he assured me was not structural but "functional")... but when I asked him about migraines with aura and told him my symptoms he got quite alarmed and wanted me checked out for seizures by my neurologist. It was almost funny.

 

[SOC]

yes, the name is important! good strategies

I had a doctor who once he checked with either the CDC or Mayo Clinic for what CFS was, and after I mistakenly told him how little I was able to do, treated me like a total ninny and never wanted to much investigate or treat any of my symptoms (except he did prescribe a med for IBS, which I've not actually been diagnosed with, and which he assured me was not structural but "functional")... but when I asked him about migraines with aura and told him my symptoms he got quite alarmed and wanted me checked out for seizures by my neurologist. It was almost funny.

LOL! Sounds exactly like my former PCP. Makes me wonder why we pay professional fees for people who can't think for themselves. Anybody can read and regurgitate the generalizations put out by the CDC, Mayo, and others. Professionals are (supposedly) paid to think.

 

[WillowJ]

for sure! makes you wonder why you pay professional fees to people who aren't the least bit professional in what they do
lol

 

[Emmanuelle]

It IS all in the name. The ignorance (and stupidity) are so frustrating. At a CFS support group a few years ago, when I complained about people's reaction to hearing I had "Chronic fatigue syndrome", the group members said, "OH! Never tell people that! Say you have ME." I never really got up the "nerve" to use the term ME-- afraid people would think I was "trying to sound sick" ... (not to mention not having a definitive diagnosis from a doctor.) But the recent efforts at using the term ME/CFS have boosted my resolve and courage; I'm practicing saying "I have myalgic encephalomyelitis." It definitely sounds more like a "real" illness; it sounds serious-- because it is. I DO have a serious illness. And I need to stop contributing to my own denial-- by "owning" the seriousness by using a more accurate name-- one with some "gravitas".

And I were ever again to tell someone that I had "chronic fatigue syndrome" and they replied "Oh, yeah, I'm tired all the time too" ... I don't know that I would be responsible for my actions ....

 

[helen41]

I recently was stuck at airport security (actually, on my way back from the fatigue lab). The woman took my cane to scan, then started barking questions at me about where I was sore, about my (nonexistent) hip replacement, etc. I told her it was a neurological problem, and she looked at me like I grew horns and again asked me which hip was sore. I finally told her I had MS.
She completely changed, was warm and solicitous, then called one of those carts to drive me to the plane. I'm pretty sure I wouldn't have had the same response if I'd said chronic fatigue- the funny thing is that I only said MS because I was too tired to speak any more than essential words. MS was so short and easy.

 

[Sallysblooms]

I try to explain it and help people learn when I am asked. I wish everyone could learn more about it. I tell them about it and also POTS. The more we explain, the better. When someone says they are "tired" too, I tell them is is a disabeling exhaustion, not being tired. And then I tell them other symptoms and tell them it is very serious. Just like POTS. I also try to teach any doctors that are clueless. A good name would be helpful....

 

[Dainty]

The next time someone around me uses the phrase, "What's in a name?" I've got to think of a good comeback. Something like,

"A whole lot of assumptions, misconceptions, and an instant dismissal, that's what!"

 

[Trooper]

It would be good if we could take ownership of the name. Everytime CFS or ME are used we are pretty much helping those that want to keep this a vague and mysterious illness. I don't know what to though!

Laura Hillenbrand "Its exasperating because of the name, which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb."
(from http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/ )

 

[Scarlett]

It is so frustrating to have a condition which has so much stigma surrounding it. I have just read the article on Esther Rantzen's daughter's 'coeliac disease', and Esther is still referring to it as 'the cause for Emily's M.E.". If she has coeliac disease, that's not ME!

I'm frustrated by this because it's blurring the edges even more between ME and CFS. Yeah, if Emily is indeed intolerant to gluten, then it could be causing her chronic fatigue syndrome. But ME is an acute neurological problem, not simply a fatigue issue. It seems every time ME / CFS is in the media it ends up doing more harm than good.

When people ask me (I don't tell them I'm ill unless there's no way round it), I tell them I have ME, a condition which affects my autonomous central nervous system. People seem to understand that and seem to accept my fluctuations in condition because of it. I would never refer to it as CFS, it just sounds like a laughable condition where you need an afternoon snooze!

 

[Nielk]

What about:

CNID: Chronic Neuro-Immune Disorder?

 

[Sallysblooms]

That is good Neilk. I think I will tell add that to my explanation. Says a lot. Until the name is changed I will explain it so all people with CFS can be better understood. I have found people want to understand.

 

[Nielk]

That is good Neilk. I think I will tell add that to my explanation. Says a lot. Until the name is changed I will explain it so all people with CFS can be better understood. I have found people want to understand.

I guess people in the south are more understanding?
When I try to explain up here in the North or more specifically NEW YORK, the most common answer I get is "i'm also always tired but I push myself to do whatever I need to do. (i.e. you are a lazy, complaining bum who does not accomplish anything in life. You are a hermit, putting a strain on the economy and on people)

 

[Sallysblooms]

WOW, that is harsh and sad, I have not run into that. Only with doctors years ago.

The south is wonderful, but I have lived in Cal. also.

I have had this for 18 years so I have explained this to a lot of people. Friends have helped me along the way. Family and hubby too of course. I tell anyone that wants to know. Gal that cuts my hair, etc.

To me, the message is getting out. It is real and not just someone kind of tired. Telling doctors is important too. I also have to explain POTS. Not easy, but I strongly feel I need to help people learn not for my sake but others they meet later.

Since I have POTS and need a wheelchair so I don't faint in places I have to walk a lot, they can see better. With or without the wheelchair when I am out, I like to help people understand. My CFS has gotten SO much better..... finally...... so the main problem is POTS now.

 

[LaurelW]

What about:

CNID: Chronic Neuro-Immune Disorder?

I'm with you--I'm tired of waiting for a proper name change. I say we just decide the best thing to call it and start using it.

 

[Emmanuelle]

You're right, Sallysblooms-- it IS important to educate people. It's just such a daunting task-- especially when the mind is foggy and befuddled. I really like the idea of a short "hand-out" that we could give people to explain. (Kind of like the cards deaf people used to hand out with the alphabet in sign-language.) I keep meaning to come up with a prepared explanation that I could memorize-- so that I don't feel so "on the spot"; I always seem to blank-out and "forget" everything I know about ME/CFS. Of course it's such a confounded complex illness-- how do you put it in a nutshell??? Maybe "I have a chronic neurological illness" would suffice. Sounds serious enough ....

 

[Emmanuelle]

(I've got to remember to read the subsequent pages of posts before I write my reply post ...) I like Nielk's "Chronic neuro-immune disorder". That's good.