Amber Alert

The Impact of Not Being Believed

I just wish someone would believe me!

How often have you said or thought that? Disbelief or skepticism about fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) 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 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 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.

Read the full study at

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