Patients’ experiences of life with chronic pain

Patients’ experiences of chronic non-malignant musculoskeletal pain: a qualitative systematic review – Br J Gen Pract. Dec 2013 – free full-text /PMC3839392/

This is an excellent study, probably because it does not try to reduce all experiences to numbers like the pain scale, that probes what it’s like to live with chronic pain and finds that it’s a constant “adversarial struggle”.

The aim of this review was to synthesise existing qualitative research to improve understanding and thus best practice for people with chronic non-malignant musculoskeletal (MSK) pain .

Meta-ethnography is an interpretive form of knowledge synthesis, proposed by Noblit and Hare, which aims to develop new conceptual understandings.  

Six electronic bibliographic databases were searched from inception until February 2012: Medline, Embase, Cinahl, Psychinfo, Amed, HMIC.

77 papers were included reporting 60 studies. These studies explored the experiences of 1168 adults ranging from 18 to 91 years of age. Forty-nine papers (37 studies) explored chronic MSK pain

Conceptual categories

The overriding theme emerging was an adversarial struggle,
giving a sense of being guilty until proven innocent.

The uncertainty of whether we will be able to get our life-sustaining medication next month is causing incredible stress for all pain patients (which in itself worsens pain levels).

As we witness one patient after another leave this life due to unbearable pain, we live in a state of persistent and corrosive fear that we will be pushed over that edge next.

There are no other effective pain relief options for so many of us, and we know that to make our lives worth living, we will need these medications for the rest of our lives.

Sometimes I fear that “the rest of my life” will not be limited by old age, but by literally unbearable pain.

They tell us not to “catastrophize”, and then go one to create the real-life catastrophe of opioid prohibition.

Patients struggled with the following:

1. Affirm self

This category incorporates a struggle to affirm my self:

Firstly, my body has become alienated from me, and has become a malevolent it. I no longer am a body but have a body. 

Secondly, although I struggle to prevent the erosion of my old ‘real self’ and not ‘give in’ to my painful body, I face the fact that I am irreparably altered.

Finally, loss of roles that made me what I am has undermined my self-worth, and I feel guilty because I cannot meet other people’s expectations.

Fear of overburdening others, and the desire to appear like my old self, encourage me to hide pain.

However, this can be a double-edged sword because people do not necessarily believe what they cannot see.

2. Reconstruct self in time (construction of time altered — unpredictable now and future)

This category shows how the construct of self now and in the future is altered.

The day-to-day unpredictability of my pain creates an endless timeless present where my life has become dominated by caution and spontaneity is lost.

Plans, expectations, and dreams of the future are irreparably altered and life focuses inwards.

3. Construct an explanation for suffering

This concept describes the struggle to explain pain that does not fit an objective biomedical category.

Diagnosis remains highly valued and is integral to a sense of credibility. 

Disbelief by others threatens my personal integrity.

The discrepancy between culturally accepted explanations and personal experience creates powerful emotions.

I feel worthless, afraid, agitated, ashamed, and guilty. Overwhelming doubt permeates my experience at work, my social life, health care, and family.

4. Negotiate the healthcare system

This category describes the struggle to negotiate the healthcare system. 

I feel ‘like a shuttlecock’ referred back and forth to various health professionals.

It describes an ambivalent stance, although reticent to engage in a system that is not meeting my expectations, at the same time I am compelled or ‘trapped in the system’.

I continue in health care in hope of a future cure.

I need to feel valued as a person within the system.

Paradoxically, although I want my body problem to be diagnosed and treated, I also need to be treated as more than just a body. This is central to the therapeutic relationship, not an adjunct.

5. Prove legitimacy

This category describes an etiquette, or ‘right way’, of being in pain to appear credible.

It does not imply that pain is not real. I struggle to find the right balance between hiding and showing pain.

The pull to hide pain and to appear ‘normal’ is increased by my sense of shame at having medically unexplained pain.

Paradoxically, hiding pain can further threaten my credibility. I strive to present a picture of myself as a ‘good’ person who is not to blame for my pain

However despite this struggle, there was a sense of moving forward.

6. Moving forward alongside my pain

Despite the adversarial struggle, our model describes six ways of moving forward alongside pain:

a. Listening to and integrating my painful body shows a developing relationship of trust and cooperation with the body. The alienated body becomes integrated through listening to, and respecting it. I am no longer at the mercy of the body but a co-expert.

b. Redefining normal describes a way of moving forward that no longer focuses on losses but on reconstructing an acceptable new self. It describes an acceptance of change and a sense of repairing existence; I have changed but I am still me and can enjoy life. This can be felt alongside grief for the old ‘real self’. This concept supports studies showing that ability to redefine self, or psychological flexibility, might help people move forward with pain and reduce its impact.

c. Being part of a community of others describes a sense of sharing, being valued and becoming credible. However, despite the benefits of being part of group of others with pain, there is a sense of ambivalence; although I am like the others, at the same time I am not like them and need to be valued as an individual.

d. Telling others about my pain describes the release that comes with no longer having to hide pain from others, and the benefits of letting others know about my limitations. I am learning to limit demands from others and manage my resources. There is a sense that I no longer need to gain the approval of others.

e. Realising that there is no cure for my pain describes the liberation from the ceaseless search for a cure which has hitherto limited possibilities for moving forward. There is a sense that recovery is about becoming someone rather than being what you once were.

f. Becoming an expert describes becoming less reliant on a healthcare professional to know and meet my needs. I am coming to know my own body, and gain the confidence to experiment and make my own choices.

 

Table 1 describes these conceptual categories and source studies with a narrative exemplar of each category.

Table 1 is a fascinating compilation of patients’ comments about their pain and how it affects their daily lives.

Figure 2 (above) shows the conceptual model drawn from conceptual categories 1–5.

Figure 3 (avove) shows the conceptual model drawn from conceptual category 6 ‘moving forward alongside pain’.

DISCUSSION

Summary

This research presents a significant advance over previous studies in that it provides a unique and extensive conceptual synthesis of qualitative research exploring chronic MSK pain using meta-ethnography.

The present model presents a line of argument that highlights the adversarial experience of people with chronic MSK pain, but also offers an understanding of how some aspects can be surmounted.

The innovation is to show that struggle pervades multiple levels of the person’s experience, sense of body and self, biographical trajectory, reciprocal relationships, and experience of healthcare services.

The struggle to keep hold of a sense of self while feeling misunderstood and not believed was described. Despite this adversarial struggle, the present model offers an understanding of how a person with chronic MSK pain can move forward alongside their pain.

This adversarial experience is central to the present model, and more research exploring similarities and differences between the experience of MSK and other types of chronic pain (such as cancer pain, headache, or visceral pain) would help to understand the experience of chronic pain.

Strengths and limitations

The findings of qualitative research are an interpretation of data. This centrality of interpretation is the strength of qualitative research that aims at challenging and developing ideas.

 

Implications for research and practice

The present model provides a theoretical underpinning for improving the patient experience and enhancing the relationship between patient and healthcare professional as a ‘collaborative partnership’ to empower self-management.

Discussion of this model with patients has the potential to show them that their pain is understood and believed, forming a basis for considering ways of moving forward.

People with chronic MSK pain do not feel believed and this has clear implications for clinical practice and education.

The present study highlights the need for educational strategies to improve patients’ and clinicians’ experience of care,

The model suggests that central to the relationship between patient and practitioner is the recognition of the patient as a person whose life has been deeply changed.

Affirming a person’s experience and allowing an empathetic interpretation of their story is not an adjunct, but integral to care

The model also suggests possibilities for helping patients to move forward. Importantly, the line of argument supports a model of health care where the healthcare professional sits alongside the person as a collaborative partner.

This collaborative focus is recognised as important in commissioning appropriate health care; ‘good commissioning places patients at the heart of the process’.

The model supports an embodied, non-dualistic approach that may be useful for other chronic conditions.

It also suggests possibilities that might help patients to move forward alongside their pain, namely

  1. an integrated relationship with the painful body;
  2. redefining a positive sense of self now and in the future;
  3. communicating, rather than hiding, pain;
  4. knowing that I am not the only one with chronic pain;
  5. regaining a sense of reciprocity and social participation;
  6. recognising the limitations of the medical model; and
  7. being empowered to experiment and change the way I do things.

I still struggle with forming “an integrated relationship with the painful body”, perhaps because of the inconsistencies in my body. My pain levels fluctuate to the point that some days I can operate almost as though I wasn’t in pain (with opioids, or course) and then on others, some intense pain makes me wonder how I can get through the rest of my life.

I’ve also had problems with “redefining a positive sense of self now and in the future”, again due to the inconsistency of my “self”. Some days my energy levels are sufficient to “do something with myself” and on others I’m so drained and interrupted by constant pains that I can’t get anything done or even imagine feeling better again.

When I make plans based on a “positive sense of self” and then have a “bad” day, it feels like I’m a disappointment to myself. I don’t know whether to “push through” or “pace myself” when neither options brings about a positive result.

All the following points seem much easier than these first two, which I keep having to revisit over and over again.

One aspect they missed is how the pained body is not a fixed entity – it is constantly deteriorating. Both aging and chronic pain lead to physical damage from the molecular level on up. (see Bodily Damage from Uncontrolled Chronic Pain)

Successful coping mechanisms used one year may not be adequate for the next, and I’m constantly having to add more and different ideas/techniques to my “coping strategy”.

I’ve had to readdress those first two points over and over again as my body seems to be disintegrating. This is actually a fairly accurate description of what happens when our connective tissue doesn’t function properly to adequately to “hold us together”.

Original study: Patients’ experiences of chronic non-malignant musculoskeletal pain: a qualitative systematic review

2 thoughts on “Patients’ experiences of life with chronic pain

  1. BirdLoverInMichigan

    “Successful coping mechanisms used one year may not be adequate for the next, and I’m constantly having to add more and different ideas/techniques to my “coping strategy”.

    I’ve had to readdress those first two points over and over again as my body seems to be disintegrating. This is actually a fairly accurate description of what happens when our connective tissue doesn’t function properly to adequately to “hold us together”.”

    Our Ehlers Danlos Syndrome reality is compounded by its ever changing nature. You nailed it here. But, for whatever it’s worth, you’ve got a great mind and a helpful blog in the meantime. So at least we have comfort in words such as these which verbalize the mostly unspeakable and utterly mystifying lives we lead.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      Thank you so much for the wonderful compliment.

      I agree about coping needs changing, mainly increasing, over the years. I’m so glad I didn’t end up here suddenly – I can’t imagine how I’d have reacted to the overwhelming changes. It’s easier to manage incremental deterioration, to have time to adjust, learn, and become wiser before the next ability is lost. It feels like a continual shrinkage to me, like the insurmountable walls of “can’t” are closing in.

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