Short discription of ME

[Wendy 0102]

When you meet new people how do you describe your disease? Most of the time when meeting new people they ‘ask what do you do for a job?’ and then I say ‘I am chronically ill with ME/cfs.’ The follow question is ‘what is that?’

How do you give a short descrition of your disease without going into detail?

Thanks in advance

 

[pamojja]

The unique expression of ME/CFS is post exertional malaise. So I try by explaining its unique expression.

Most understand that after a 12 hrs day on construction site (or a simple flu), the exhaustion, that everything hurts, and concentration declines. Which after a night's rest usually ceases. While the pain, exhaustion and concentration difficulties continue with varying degrees - from being able to still work part-time, up to being bed bound - with post exertional malaise.

Next, the question arises, how or why it is not treated? Where I make the analogy to MS, where before finding an underlying cause, no treatment was available. And the ignorance even with physician about such under-researched diseases.

I don't think it can be explained without going, at least in some detail, to someone oblivious about ME/CFS. It is too unique. Or one risks severe prejudices.

 

[southwestforests]

The follow question is ‘what is that?’

So far the only person who has asked me that is the young new doctor who replaced old grey retiring one.

Bank tellers, waitresses, auto mechanics, dental techs, creative writers group members, have all known about the disease the DOCTOR did not.

And at this point I will squelch the compulsion to vent and editorialize.

How do you give a short descrition of your disease without going into detail?

I frequently just describe the thing as being mitochondrial dysfunction plus neurological autoimmune disease plus endocrine autoimmune disease.
Most people seem to get the concept of autoimmune disease.
A few have asked what mitochondria are.

 

[Rufous McKinney]

Assuming someone were to ask that question, my current response would be to mumble something a bout "neuroimmune disorder".

Perhaps I"d trail off with a....and "I can't do much of anything". (yet, I've never uttered that sentence I suspect)

ITs real easy to say that one. For most people that would be sufficient to end any further inquiry.

 

[stellaluna]

I used to just say “ME” and then call it an autoimmune disease (my symptoms seem to lean towards the autoimmune-type). Neuroimmune is a bit harder for people to understand.

But now I call it a mitochondrial disease. I still feel a little weird about it, since ME isn’t official in that category, but it seems to satisfy people’s curiosity. It also helps to differentiate the fatigue from the “everyone’s tired” type of fatigue.

“Well, everyone is tired. I’m tired too, I need my coffee every day. Does that mean I have ME?”

My CELLS don’t produce the energy I need.

 

[Rufous McKinney]

But now I call it a mitochondrial disease.

I think that is also a workable, simple statement most folks would think: oh, that does not sound good.

My CELLS don’t produce the energy I need.

This is often a bottom line comment I might make. I just said that to the neurologist.