It's all in the NAME

[Dainty]

So far the name I like the best is one that I think Mikovits suggested: neuroendoimmune dysfunction. I'm just writing it from mermory, might not have it quite right.

 

[Misfit Toy]

I was supposed to get together with a guy for a "drink." I wasn't going to drink. Anyway, I had told him I was unwell and unable to do so. He kept saying, "get over the sniffles that you have." I never even told him I had a cold. Anyway, I finally sent him an email saying, "I have chronic fatigue syndrome along with fibromyalgia. It gets in the way of my life sometimes." I then went on to discuss music. I never heard back from him.

For years I would tell people I had lupus, diabetes, all kinds of made up names and then I decided....that's it. I need to come clean. I know it's not the best name. It's an awful name. But I am too brain fogged to remember what ME is. So, I am speaking my truth. I have even wanted to tell people in the past that I had cancer. How awful is that???

I just talked to an acupuncturist that when I said I had CFS, he went..."hmmm." After I told him that no I am not taking vitamin D right now because I am so sick, I keep forgetting, he said, "I don't think I would be best for you. When I give my patients something to take, if they don't take it, I don't want to deal with them anymore." What an ass. I told him, "Excuse me? I just found out my vitamin D was low. I am very sick right now and forget to take it but that doesn't mean I am not a patient who complies.

I knew it was because I have CFS. I heard it.

I hate the name, but it's the name of the illness we have.

 

[SOC]

I hate the name, but it's the name of the illness we have.

Yes, that's true. But my feeling is that the name itself was generated (with probable ill intent) by humans with an agenda. It has nothing to do with the reality of the illness.

Denying the reality of the illness is one thing, denying the name is another.

I don't think we should claim to have something other than we do in order to gain some degree of understanding (although it is tempting), but I think we can fight the idiotic name some fools gave it.

Using one or more symptoms to describe the illness suits me for the moment. No one really wants to know all the gory details of anyone else's illness, at least not right off the bat.

We are not defined by our illness. We can let our illness define us, but we don't have to let it.

When my daughter goes out with her college pals, she doesn't drink. She doesn't explain it, she just says, "No, thank you." If they want to walk somewhere very far, she tells them that she can't walk far or stand for long periods because she has dysautonomia. And so on. People who want to know more, ask.

To hell with the name....

 

[Misfit Toy]

Sickofcfs...your daughter is sick? I am sorry.

There is a saying that you should explain nothing. I agree with it.

I just felt the need to tell this guy that I have CFS or fibro and I didn't go into detail; the reason I told him is that I guess I am tired of not getting into it and being anxious all the time because I am truly sick and this person doesn't know the gravity of the situation. That happens to me everytime and then they find out anyway. I feel it's better to be upfront. In my experience it is. Anyone who can't handle it...get it now. Oh and I didn't tell him I couldn't drink because I have CFS. I told him I couldn't get together right now because of it. He called me a month ago and I keep dodging the bullet and blowing him off and saying I am ill but not saying what it is that I am ill with....so, I let him know. With no explanation of what it is. I said, "I have CFS and fibromyalgia." That is it. No explaining of what that is.

College kids are different. Or, not so much. I don't care what age you are. People don't get it.

I am not my illness, but right now....my illness is too much a part of my life for me to say nothing when prompted.

 

[Sallysblooms]

I think there is really no way people can understand CFS if we don't explain it. It isn't on tv etc like other well known problems. It is up to us to get it out there and tell people what it is. If something effects our CFS or POTS in a bad way we can tell why. It is up to us if we do or not. I choose to help others understand. I didn't know what it was before I got it either. There are so many health problems to understand.

 

[Carrigon]

People where I live think I have Lyme, which I do. But they don't know I've got alot of other stuff on top. And they seem to think Lyme isn't that bad of a disease. But they believe Lyme exists, so I don't get the crazy looks when I say it. I'm so sick of trying to explain to people what I have. And I get so upset when someone says to me, "what do you mean you get sick?". UGH! Sometimes I just want to scream at them. I usually just don't say much at all. I'm tired of trying to explain it.

 

[SOC]

Sickofcfs...your daughter is sick? I am sorry.

There is a saying that you should explain nothing. I agree with it.

I just felt the need to tell this guy that I have CFS or fibro and I didn't go into detail; the reason I told him is that I guess I am tired of not getting into it and being anxious all the time because I am truly sick and this person doesn't know the gravity of the situation. That happens to me everytime and then they find out anyway. I feel it's better to be upfront. In my experience it is. Anyone who can't handle it...get it now. Oh and I didn't tell him I couldn't drink because I have CFS. I told him I couldn't get together right now because of it. He called me a month ago and I keep dodging the bullet and blowing him off and saying I am ill but not saying what it is that I am ill with....so, I let him know. With no explanation of what it is. I said, "I have CFS and fibromyalgia." That is it. No explaining of what that is.

College kids are different. Or, not so much. I don't care what age you are. People don't get it.

I am not my illness, but right now....my illness is too much a part of my life for me to say nothing when prompted.

Spitfire, I didn't mean to be critical of your decision to tell the guy. Just trying to share what works for us.

My daughter and I both have ME/CFS. Six years ago we both came down with the same sudden onset flu-like illness, which is why I've been convinced there's a viral component to all this.

People don't get it. No doubt about it. Partly, they don't want to get it. It's VERY scary that "regular" people can get this horrible debilitating illness. It could be them. They don't want to think about it. Sucks for us, but that's the way it is.

I find it easier to let people get to know me first. Then they're more willing/able to think about the illness that is affecting me. I don't hide my illness, but I don't put it out first thing out front, either.

The guy probably would have bugged out if you had any serious illness.

The illness intimately affects our lives, but it isn't us. At least, that's what we keep telling ourselves around here. :Retro smile:

 

[Nielk]

Anyway, who came up with this name?
Does anyone know?
Who has a right to name a disease? Is it the CDC? NIH? Any doctor?

I guess whoever defines it, can name it?

 

[Misfit Toy]

Back in the fall, for 4 months, I would get together with people and not even mention the illness. I would to close friends but I was in pretty good shape and didn't even really need to mention it. Now, I am too sick to hide it. So, for me, I had to say something because he had no clue what was up with me and why I was evading him.

The problem with CFS or any illness is, it depends on where you are at in the disease. I am too sick to be around anyone right now because it's all I can think about because I feel that ill.

People used to say to me, I don't know how you can fake it. To me, I was able to. Now I feel like I am dying, so there is no getting to know "me" right now. I don't feel like talking about music, movies or anything. I just want to sleep and be out of pain. In survival mode.

 

[Emmanuelle]

Spitfire-- I hope you'll be able to "fake it" again soon ...

I think for me there's sort of a circle of closeness that determines who I tell what to. A new or casual acquaintance might not rate an explanation, but someone closer to me I feel needs to know more and is worth the energy to explain. I figure if they care, they'll want to know more ...

 

[SOC]

Anyway, who came up with this name?
Does anyone know?
Who has a right to name a disease? Is it the CDC? NIH? Any doctor?

I guess whoever defines it, can name it?

We have our dear friends at the CDC to thank for the brilliantly devised name.

 

[Misfit Toy]

Yes, I need to be able to fake it again soon. I miss faking it. You need energy to fake it! : )

 

[WillowJ]

Anyway, who came up with this name?
Does anyone know?
Who has a right to name a disease? Is it the CDC? NIH? Any doctor?

I guess whoever defines it, can name it?

Or whoever refuses to believe they are looking at patients with a previously-defined disease and decides to invent a whole new case criteria. They can name it, too.

We have our dear friends at the CDC to thank for the brilliantly devised name.

Indeed!