How to make people take CFS seriously

[Hipsman]

Usually I would just say I'm sick or not feeling well, because "chronic fatigue syndrome" seems to only humor them
But when saying: "I have chronically active infection due to immunodeficiency" people seem to take it seriously!

This description fits to what cfs is in my case, but I think anyone with cfs can use it, because it's broad enough and fits to what cfs can be.
You could add that its "streptococcal" or any other infection that shows up in your tests!
Anyway, it's for general public, not infectionists/immunologists, hope it helps!

 

[Wishful]

I used 'chronic neuroinflammation' before I knew about ME, and didn't know what I had. I think it's closer to true, since I don't think I have a chronically active infection, but rather an immune system that doesn't want to switch back to the inactive state.

 

[Rufous McKinney]

I would say I have Chronic Eppstein barr. (cause, thats what i always figured was fundamentally wrong here).

But of course, nobody asks.

 

[Hipsman]

nobody asks

I use it when someone asks to do chores that are too much for me to do, or when teacher asks why have I been skipping lessons

 

[Wishful]

Infested with gremlins?

 

[Rufous McKinney]

Infested with gremlins?

Or: what were those little Star Trek Creatures? Tucked away in all the darndest places.

 

[Chrisjr19]

Or: what were those little Star Trek Creatures? Tucked away in all the darndest places.

Infested with Tribbles, I’m going to use that one 😂😂

 

[southwestforests]

It can be fun to say things like "There is something wrong with my endocrine system which makes my body and cellular structure produce too little energy all the way down to the mitochondrial level" and watch their eyes as they work out whether to ask questions or to pretend they understood what you said.

Yeah, I'm autistic and I notice things like that!

 

[southwestforests]

Ya know what, I will tell a tale and relate a conversation where I had myself all kinds of passive-aggressive entertainment.

It started with a fatigue flare hitting and being noticed and someone who shall remain anonymous asked what was happening.

Me: There is something wrong with my endocrine system which makes my body and cellular structure produce too little energy all the way down to the mitochondrial level.

Them: What's the cure for it?

Me: As of yet there isn't one.

Them: Can it be treated at all?

Me: Sometimes some things work for some people, but most times most things don't, because the disease's cause hasn't yet been determined and if you don't know what's broken you don't know what to fix.

Them: So it is a disease?

Me: Yes.

Them: What's it called?

Me: Well, it has a couple names and the common simple name for it is often ridiculed by the shallow and uninformed people among us.

Them: (working out whether they should ask and whether they think that I'm likely to think them shallow and uninformed)

And we now present today's unsolicited life advice: Never underestimate the potential entertainment value to be found in diseases which can make your life a living hell.

 

[Rufous McKinney]

And we now present today's unsolicited life advice: Never underestimate the potential entertainment value to be found in diseases which can make your life a living hell.

Occasionally, I too have found all this "slightly entertaining".

You could even add: And ya know what? You could end up "getting it" also!

(then, the is it contagious conversation can happen).

 

[Rufous McKinney]

There is something wrong with my endocrine system which makes my body and cellular structure produce too little energy all the way down to the mitochondrial level" and watch their eyes as they work out whether to ask questions or to pretend they understood what you said.

Yes,we like to include Mitochondria. Technical, slightly accurate, and maybe can be translated in to any language!

While recently in Southern Mexico, my arrival was greeted by my new relatives, who handed me a bottle of their version of an herbal Anti-Depressant (and stay out of the sun, it had St. Johns Wort in it).

I go on the immediate defensive. If anyone here actually understands this mess, I AN NOT DEPRESSED. This is simply depressing.

So: I go after mitochondria in Spanish. The word is similar enough, thank goodness for Latin roots. In the end, I don't believe they ever "got it". If they did they would STOP ASKING how are you?

 

[Wishful]

I AN NOT DEPRESSED. This is simply depressing.

If we had a thread for t-shirt quotes, that would be a winner.

 

[MichaelM]

The MS diagnosis has been floating for me.

That's been too much to drop on some people. Also I think conditions like MS have stigma and create awkwardness (incurable "disease" can take the fun out of being a friend). People think of MS like "oh, wheelchair stuff". At least, that's how I used to think of it.

So "it behaves a bit like MS, but not really, probably gastro related neuro inflammation and I reckon it's gonna be OK in the end as I treat it so aggressively with diet and lifestyle" (my issues are likely related to SIBO and elevated d-lactate, but still working through it).

Otherwise, "gut problems, neuro problems, kind of complicated... but have you heard of faecal transplants?! Let me tell you all about them!" (often I actually end up with qutie an audience )