As anyone living with chronic pain can tell you, never does a day go by that’s not dominated by the continuous struggle of just trying to cope. Often lost in that struggle is a sense of self - a patient’s relationship with their own body.
In an effort to have doctors better understand that experience, UK researchers looked at 77 qualitative studies that examined chronic musculoskeletal pain (MSK), a disorder that often has no medical explanation and does not go away. Twenty-eight of the studies explored the experience of fibromyalgia.
“Being able to collate this vast amount of information from patients paints a worrying picture about the experiences they have with chronic non-malignant pain,” said study co-author Kate Seers, a professor of Health Research at Warwick Medical School and Director of the Royal College of Nursing Research Institute.
“This has clear implications for clinical practice and education. Our 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 by pain.”
Among the findings published in the Health Services and Delivery Research journal:
- Patients often struggle with the fundamental relationship with their body, and a sense that it is no longer “the real me.”
- A loss of certainty for the future, and being constantly aware of the restrictions of their body.
- Feeling lost in the health care system; feeling as though there is no answer to their pain.
- Finding it impossible to prove their pain; “if I appear ‘too sick’ or ‘not sick enough’ then no one will believe me.”
“Having patients feel that they have to legitimize their pain, and the sense that doctors might not believe them, is something that should really concern us as health care professionals,” said Seers.
In fact, researchers say that not being believed by others can have an impact on a pain patient’s participation in everyday life.
“For some years, qualitative research has shown that people with chronic MSK pain do not think that doctors believe them, and this finding has not changed in more recent studies,” the authors wrote.
“Our 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 by pain. Listening to a person’s narratives can help us to understand the impact of pain.”
The authors add that it’s important to understand the experience of people with chronic MSK pain as a constant adversarial struggle.
“This may distinguish it from other types of pain,” they wrote. ”Our findings call on us to challenge some of the cultural notions about illness, in particular the expectation of achieving a diagnosis and cure.”
The study also identified a number of ways in which patients can move forward with their lives.
For some, the key is to build a new relationship with their bodies and to redefine what is normal, rather than trying to maintain the lifestyle they had before the pain. Developing an understanding of what the body is capable of can also aid the process of living with musculoskeletal pain.
Another step is realizing that pain is often here to stay, rather than focusing on diagnosis and cure. Becoming your own expert and making your own choices is also important.
Moreover, patients are encouraged to become part of a community, telling others about their pain and redefining their relationships.
“This paper shows there can be value in discussing the condition with other people who are going through the same experience and knowing that you are not alone,” said study co-author Dr. Francine Toye, of Nuffield Orthopedic Centre, Oxford University Hospitals.
“Of course you can learn about your condition from various sources, but sharing your experience seems to really help people to move forward.”
An interesting video that examines one woman’s struggle with MSK pain can be seen here: