Difficulties of living with an illness not considered a 'Disease': Focusing on the illness behavior of ME/CFS, 2020, Nojima

This isn't biomedical research so I posted it here.

 

Note:

 

Nothing wrong with wanting to dispel a label because it is false. The "doctor shopping" in my experience is indeed the ordinary reaction to not getting help.

 

I was cringing as I read this, what'll we be accused of this time.... but no, surprisingly fair.

It is a totally different experience. Several members of my family suffer from a well under long term health condition for which there are treatments, but no cure.

Their attitude to illness, relationships with doctors and experience of the benefits system is quite different to mine.

They don't have the huge burden of having to always be your own expert.

 

In my opinion...

Any patient who is classed as being a "doctor-shopper" by an average doctor is disliked because doctors don't like to believe that any of their number can be utterly useless. But sadly, 50% of doctors are less capable than the average doctor.

 

I automatically knew that "doctor shopping" will not help, and visited only quite some of them at the beginning to rule out things and to be clear.

Sadly such knowledge didn´t help in another sense 15 years later, when I couldn´t keep working (and found easily enough doctors who believed me), to stay mentally healthy throughout. Its a kind of a shy-lie that I picked up myself, like to excuse myself for being ill despite not seeming to really be so, though this paradoxically only became virulent after I was so stupid to allow to get mistreated for one single time.

 

Yes, I think it's a self limiting behaviour in our case. Either there's little they can or will do for you in many cases. You soon realize you're wearing yourself out for no real benefit.

Then it turns in to an avoidance strategy when it dawns on you they can do you so much damage.

 

All this discussion reminds me of a quote from Dr. Unger of the CDC:

 

What I found interesting is that the author notes that "the sufferers considered the initial conditions such as being unable to wake up in the morning and diminished thinking ability as common and temporary."

I think that's interesting because the fear-avoidance model assumes that patients somaticize and catastrophize benign bodily sensations and then decrease activity levels inappropriately. Nojima description, however, suggests that patients ignored their symptoms and tried to carry on as good as possible.

 

I was encouraged by my Dr to "doctor shop", ie he suggested helpfully that I was free to go elsewhere if I wanted to. I told him I wasn't going anywhere, and I haven't. If I want something, I go to him, and he gives it to me.