Why getting a diagnosis of chronic pain is important

What’s in a name? Why getting a diagnosis of chronic pain is important | HealthSkills Blog

Here is a thoughtful article exploring how a diagnosis might affect many dimensions of the chronic pain experience, worth reading in full.

Words have power when we’re looking for treatment, or we’re giving treatments for pain. I’ve written about the staying power of language used to describe back pain here.

But let’s look at a more distinct problem: diagnoses.

“A diagnosis is integral to medicine because it organises illness, identifies treatment options, predicts outcomes and provides an explanatory framework (Jutel, 2009). ”

Diagnoses also give people permission to be ill. Being diagnosed replaces mystery with — well, something else depending on the label.

What I found, and others too, was that once a person had been told that their pain wasn’t likely to go, that the disease was chronic and couldn’t be cured, it wasn’t long before people began to think about life with pain rather than searching for a cure.

It’s interesting that although I could find a lot of research looking at how doctors let people know they have cancer, or a life-limiting illness, I couldn’t find anything to show how doctors give someone the news that they have chronic pain

A diagnosis of chronic pain, in many cases, means the doctor has no more treatment ideas, or at least, a very limited repertoire.

the point of view of the person living with chronic pain… For probably four or five years this person will have been looking for answers… With each label, a new set of predictions is made. “If you do X exercises, it will come right”. “Here, let me do Y procedure and you take this medication, and you’ll be fine”.

And each time, the person hasn’t responded. The feelings of hope go up with a new diagnosis, then plunge to the depths as the new treatment doesn’t work.

it’s not until someone “official” makes a diagnosis, confirming the prognosis, that her or she can put away the ideal of “going back to normal” and begin to figure out how to be a person-in-pain rather than a person waiting for a cure.

Because until someone official sanctions this suspicion, there still is this sneaking hope that maybe, just maybe, a cure for this pain will be found, if only they get the right diagnosis.

What makes it so hard for doctors to give this diagnosis?

Chronic pain is a disputed disorder. It lives between physical disease and mental illness. Often no physical cause can be found,

an assumption is made that therefore it must be “mental” or at the very least “biopsychosocial”. But not biopsychosocial in the way that I understand it, more of “psychosocial-because-I-can’t-find-the-real-problem”.

I also think doctors (and other health professionals) have a hard time admitting they can’t fix something

To tell someone “you have this chronic pain, you’ll need to learn to live with it” can provoke anger, grief, despair, distress.

It’s also an invitation to a long-term healthcare relationship.

So, one more piece of the puzzle of helping people live well despite their pain is letting them know they have chronic pain, that it won’t go away completely, and conveying your belief that they have the resources to live well and you’ll be there beside them.



3 thoughts on “Why getting a diagnosis of chronic pain is important

  1. Jessi Finds Out Fibro

    Reblogged this on Finding Out Fibro and commented:
    From all the research I have been doing, this is the one MAJOR failing that could painlessly, easily, compassionately be fixed by healthcare professionals realizing the grief that is provoked when you tell someone they are not going to get better, or that they should get better if only they were working harder or being a better person. Not helpful. Inviting someone to be a part of a long term healthcare relationship with goals and someone who calls and checks in on their patients from time to time is what seems to make a huge, massive difference in the quality of life and treatment outcomes of many with chronic pain disorders. I love how cleanly this article lays that side of getting diagnosed out!

    Liked by 1 person

    1. Zyp Czyk Post author

      On the other hand… it helped me to find out that the cause of my pain was not “curable”, because it stopped my exhausting and expensive search for cures. Instead, I am now working on “managing my pain”, which includes not aggravating it, taking prescribed meds, and most of all, working on my attitude toward my pain.

      For me, it’s critical that I not engage in “fighting it”, because I’ll always lose. I must learn to make peace with it, accept that this is the way life is going to be for me and learn to live WITH the pain, side-by-side in this body.

      If Nelson Mandela can forgive and make peace with the forces that unjustly imprisoned and tortured him for all those years, as my pain has done to me, I can try to do the same.

      Liked by 1 person

      1. Jessi Finds Out Fibro

        Yeah, that first comment was incomplete, I am in so much pain that I’m just not thinking things through all the way, today. I totally agree that if the pain is incurable, we just need to know that, and be told in the right way (which is what I meant, not that a doctor shouldn’t tell us, just that they should be aware of the feelings they are provoking by saying so, and be a little compassionate), so we can start the road to acceptance and toward moving forward into a life lived with chronic pain, not just a life survived. You are absolutely right, though!

        Liked by 1 person


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