Chronic Pain Patients Often Lose ‘Sense of Self’ (Video)

Chronic Pain Patients Often Lose ‘Sense of Self’ (Video)

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.

bigstock-Woman-Depressed-Series-27254924In 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:

Authored by: Richard Lenti

There are 8 comments for this article
  1. Steph at 7:47 am

    Wow! This just brought me to tears. For the first time within my 12 year struggle, I don’t feel alone! Finally! Someone understands what I go through daily. Thank-you so much for sharing your story!

  2. Sue Druan at 11:41 pm

    I live with very disabling chronic pain. some of the cause is known and some isn’t. I don’t really have good days anymore where I can function normally even for a short time. On the outside I look fine, so it’s hard for people to understand the pain I am in. I still try to do things and I pay for it daily. Things have to get done somehow, so I attempt to do them. Thanks to the people who abuse pain meds, veterans assistance has cut down my pain meds to minimal doses. Although it does help some, I am it in complete agony 80 percent of the time. I can’t even cook myself a meal. I can’t sleep, the pain keeps me awake and I have to keep shifting positions constantly. People don’t understand the pain I’m in. They can’t see it. I have to admit even though there are medical reasons for a lot of it I don’t understand why I have to live like this. I feel completely useless and trapped by this pain that I can’t control.

  3. Julie Anna Bloodworth at 7:43 pm

    I hope that everyone that knows me will watch this when I post it. It describes me and my life EXACTLY. And how everyone reacts to me. It took me about 8 years to finally accept the Chronic Pain and when I finally did that, I started limiting what I did and no longer pushed myself to the point where I knew that I would pay for it. I no longer let it bother me when friends told me that they wished they could stay home and collect a check (disability, which took 2 years to be approved and hardly covers my medical costs) LIKE ME. Little knowing that I would give just about anything to be able to get in the car and go to work, go grocery shopping, hell – go anywhere and do anything.

  4. Constance Carroll at 10:29 am

    I would so love for my Doctors, friends, and family to really watch this, to listen. Mine adds vertebrae damage from a fall and now RA, which wins the battle a lot of days.
    Instead of pacing myself to do the things I enjoyed, I gave everything to stay at work for 10 years, with nothing left for myself.
    I feel so bad about the excuses on my bad days, the musunderstood good day, and have lost my sense of self.
    This is a lonely battle each day.

  5. Cynthia at 4:54 am

    She is ME! Thank you for this wonderful video.

  6. Michelle Ramos at 12:56 am

    Wow. Listening to that video was like listening to a recording of myself (with an accent). The dialogue that plays over and over in my head each day. Then to read that there are others who identify with it too. At least I’m not as out of my mind as I thought I was! But now what, what’s next, what do I do with this realization?

  7. Nancylee Manzi at 5:50 pm

    I feel like this video is my life story. I can’t tell you the tears that I shed watching and listening to her describe ME.. How do you look great on the outside, but are screaming in agony on the inside.. I force myself to continue working .. only a few hours per week.. because If I give it up ..it means I am giving in to the pain.. so I torture myself every week.. to make it through three four hour shifts… only to spend the next four days recuperating from it… Pain meds are there, but I don’t like to take them all the time… this week ,at the pain management doctor, I came to the realization that I need them daily. That I have been letting my body suffer for no reason other than being stubborn. Thank you for the video. I am going to share it to my facebook. I am going to be embarassed admitting my weakness, but it has to be done. It’s gone on for too long now.

  8. kathy bragg at 2:52 pm

    Thank you for making this video. It was nice to hear someone else describe living with pain and what its done to their life. I feel very much the same as the woman in the video and would like to know more about support groups etc.