What do you call your illness?

[acouchy]

i use me. but unfortunately cant say the full name right then when always asked what that is

Probably better off with saying ME. Whenever I say Myalgic Encephalomyelitis I get a... what the what? Yup, it is a mouthful.

 

[acouchy]

ME.

'chronic fatigue syndrome' feels like an accusation, not a diagnosis.

I agree with that. When I do have to say Chronic Fatigue Syndrome I cringe. It really does make me feel ashamed. After I tell myself that it not my fault and I did nothing to deserve this illness and that it is just a name. But really it is not just a name. It is a really bad name that is insulting and does not even come close to describing this illness. I think having to say Chronic Fatigue Syndrome as being the verbal equivalent to having to wear the scarlet letter.

 

[me/cfs 27931]

Has anyone tried calling it "Systemic Exertion Intolerance Disease" or SEID? If so, how did people respond?

 

[whodathunkit]

I use M.E- often people know someone else who has it- sadly it affects many people as we know.
I think the emphasis on fatigue in CFS leads people to assume it is just how they feel when they're really tired....

I wonder how differently the illness would be perceived today if the PTB when CFS was named had decided to use the word "Exhaustion" instead of "Fatigue": CES. The word "exhaustion" is more apt, anyway, and it definitely imparts an urgency to the illness that the word "fatigue" just doesn't convey.

 

[Mij]

I have a "medical condition" works for me, and if I have to explain further then I say my immune system is shot so it affects my energy levels. Whatever, I don't tell anyone I have CFS or SEID.

 

[TiredSam]

I have a "medical condition" works for me, and if I have to explain further then I say my immune system is shot so it affects my energy levels. Whatever, I don't tell anyone I have CFS or SEID.

What do you do when they say "What's it called?"

 

[Mij]

@TiredSam they don't ask

 

[TiredSam]

@TiredSam they don't ask

Well they always ask me when I try to get away with "medical condition", "immune system" etc, so then I say ME, and they look blank and ask what's it called in German, so then I have to confess to the stupid name CFS, and I get "oh, isn't that like burnout?"

 

[Sushi]

I have a "medical condition" works for me, and if I have to explain further then I say my immune system is shot so it affects my energy levels. Whatever, I don't tell anyone I have CFS or SEID.

I avoid CFS like the plague it is. I usually go with something like Dysautonomia which, when explained, sounds like it would be enough to ruin anyone's life. Even most docs I talk to accept Dysautonomia.

 

[Mij]

@TiredSam that's unfortunate that you have to say CFS I've been ill for 25yrs and have mastered the skill of avoiding going into detail. I don't feel any obligation to reply any more than I feel the need to. Only my close family and doctor have this information.

 

[rosie26]

Well they always ask me when I try to get away with "medical condition", "immune system" etc, so then I say ME, and they look blank and ask what's it called in German, so then I have to confess to the stupid name CFS, and I get "oh, isn't that like burnout?"

Many years ago I bumped into or should I say staggered into (I could hardly walk) someone I knew from my work days. I told him I had been really ill and he asked what it was and I told him ME and then had to say CFS. He then said he had been feeling really tired lately as well and had an expression of worry on his face for himself.

I was too sick to say much more to him.

 

[acouchy]

I wish this illness had only one really good name and a better acronym...

I am wanting to make some higher end awareness jewelry so I can donate a percentage to research. I am probably overthinking it. I am totally indecisive not only about this but also about pretty much everything in my life thanks to brain fog.

"ME" with an awareness ribbon would look like I am wanting to raise awareness of self-centredness. Patients that have not received an ME diagnosis may not be comfortable with it.

"CFS" would piss off the group of patients who say CFS does not exist.

"ME/CFS" would probably still piss off the "CFS does not exist group" of patients. And the patients who have been diagnosed with CFS and not ME by a doctor still might not be comfortable with it.

Not really considering SEID as it hasn't been officially accepted yet.

I may end up making three versions to have it all covered.

In my life I have used all three. Have not used SEID. I have been diagnosed with CFS and ME so I feel comfortable saying either or. I really want to stop using CFS. The last time I said I have CFS the woman I was talking to informed me that she had that a few years ago. Apparently it occurred when she was going through a divorce and she couldn't get out of bed for a few weeks. Ya right... don't think so. Depression denialist. Just hope her GP didn't diagnose her. I think I made her feel dumb when I told her my story. In the future I may just say I have a neuroimmune disease that does not currently have any treatments. If I am asked about symptoms I will list them.

 

[Mij]

"ME" with an awareness ribbon would look like I am wanting to raise awareness of self-centredness. Patients that have not received an ME diagnosis may not be comfortable with it.

What about a dead battery button?

 

[acouchy]

What about a dead battery button?

View attachment 15309

That would be fun.