The Impact of Not Being Believed

[Guest guest]

Comment from Poster:

I have ME/CFS plus Multiple Chemical Sensitivies or MCS. But I don't see

much on the internet in the way of articles about people not believing how

chemicals make us sick though - and in my experiance, it has been a whole lot

easier to get people to take me seriously about ME/CFS then it has about MCS.

But then, I understand that the majority of those with FM and also CFS also

have MCS, though it is too bad that many don't seem to think it would help them

to do something about the MCS. I know that I finally got my ME/CFS to go into

remission when I finally took MCS seriously and started to do something

about it. Shan

 

The Impact of Not Being Believed

 

 

_http://chronicfatigue.about.com/b/2008/03/03/41.htm_

(http://chronicfatigue.about.com/b/2008/03/03/41.htm)

 

" I just wish someone would believe me! "

How often have you said or thought that? Disbelief or skepticism about

_fibromyalgia_

(http://chronicfatigue.about.com/od/whatisfibromyalgia/a/what_is_fms.htm) (FMS)

and _chronic fatigue syndrome_

(http://chronicfatigue.about.com/od/whatischronicfatigue/a/what_is_CFS.htm)

(CFS or _ME/CFS_

(http://chronicfatigue.about.com/od/cfsglossary/g/MECFS.htm) ) is something most

of us are all

too familiar with, and if you've experienced it yourself, you don't need a

study to tell you how painful it can be.

Wouldn't it be great, though, if someone would tell your doctors how

detrimental it is for them to dismiss your pain? I was delighted to see a

chronic

pain study out of Wales that does tell them. (While this study was only on

chronic pain, I don't think it's a stretch to say the findings would apply to

fatigue and other " invisible " symptoms.)

Of a group of 8 people in the study, only 2 said they had no problem getting

health-care workers to accept their word on pain, and those two people also

had visible disabilities. Stories from the other 6 included doctors denying

pain medication, shouting at them for taking more pain killers than

prescribed, and even blatantly saying, " I don't believe you, " and walking out.

Those actions left them with feelings that (no surprise to us!) included

anger frustration, isolation, depression and thoughts of suicide.

The study concludes that doctors and other health professionals just need to

believe what their patients say when it comes to pain, bringing up a

definition of pain coined 40 years ago by Margo McCaffery, a chronic-pain

nursing

consultant: " Pain is whatever the experiencing person says it is, existing

whenever the experiencing person says it does. " The logic is simple, but the

implications to our treatment would be profound.

The final paragraph sums up what practitioners can do to avoid all these

problems:

 

These simple means are: active listening; being non-judgemental; accepting

the pain experience as credible as recounted by patients; and thus showing to

patients that the relationship is based on caring and empathy. While these

may be considered mundane and accepted practice, it is vitally important not to

overlook the impact they have on patients with chronic pain.

Personally, I've been very fortunate. While I've seen several doctors who

had no clue what was wrong with me, the only ones who've discounted my pain

have been an ER nurse and a dentist. What have you experienced? How have you

dealt with it? Have you found any solutions? Please share your stories by

leaving a comment here or in About.com's _Fibromyalgia & Chronic Fatigue

Syndrome

forum_ (http://chronicfatigue.about.com/mpboards.htm) .

_http://chronicfatigue.about.com/mpboards.htm_

(http://chronicfatigue.about.com/mpboards.htm)