Staff Perspective: Living With Chronic Pain
In our roles as trainers at CDP, we want to help providers develop evidence-based skills for working with military connected populations. For me, one of the areas I provide training in is Cognitive-Behavioral Therapy for Chronic Pain. All of us, whether trainers or providers in clinical practice have our own perspectives and experiences, and yes, even biases about those who have chronic pain. Let’s face it, challenges inherent in treating those with chronic pain, such as slow or minimal progress, can lead to provider stress and frustration. It is important not to lose our empathy; after all, persons living with chronic pain are often themselves struggling and feeling hopeless. Here are three experiences they often describe:
Feeling invalidated and disempowered by the medical system
Persons living with chronic pain may experience unsupportive interactions with healthcare providers, feeling as though their concerns are not taken seriously or their treatment goals are not given credibility. Healthcare providers may even come across as dismissive, subtly or outright. Compare these experiences:
This terrible feeling of not being believed in and not being listened to. The only thing I have asked for is help so I can take care of myself. (Gjesdal et al, 2018)
I have been discredited so many times…they say my pain is because of my obesity. (Hambraeus, Hambraeus & Sahlen, 2020)
I think doctors need to be more sensitive and respect people’s opinions when they say something...it’s what’s going on with them and their feelings need to be validated. (Webinar)
[The PCP] took the time and talked to me, not just read my journal. He wanted to hear it from me. (Gjesdal et al).
I strive to apply the Golden Rule in my life – how would I want to be treated? Surely reading this we would all prefer to walk out of the clinic with the last experience. Even when we as providers observe that the person’s expectations for treatment outcome may be unrealistic, we can acknowledge that these hopes come not unexpectedly from fears and difficult experiences; we can find ways to broach this mismatch in an empathic and validating manner. Too, we can accept as persons with pain are asked to do that practically addressing the present situation can simultaneously coexist with hope.
Connecting Physical and Mental Well-Being
Persons with chronic pain may make a connection between their physical health and their mental health, and note how each affects the other. However, they may also focus primarily or exclusively on their physical health given how disruptive and distressing chronic pain can be. For these persons, how a provider broaches the connection can influence how receptive they are to readiness to discuss it, much less readiness to address it in treatment. Consider differences in these experiences:
He says it’s all in your head. Go to mental health. (Driscoll et al).
I think they don’t really differentiate between physical and psychological pain and their relationship…You can’t really separate those…If you have physical pain, it’s going to develop into psychological pain. (Driscoll et al).
You will not be given priority since it’s [chronic pain] not fatal. But because of the mental part of it, then it could actually be fatal. You’re in so much pain that you just don’t want to live anymore. But it seems like that’s not important to them. (Gjesdal et al).
I learnt some mental tools after a visit to the pain clinic, but it’s still me who has to do the job. I’m proud of what I’ve done. (Gjesdal et al).
We can be open to how we present information, use the person’s own examples and language, and check in on reactions to our attempts to help connect physical and mental well-being. This in turn helps provide motivation to begin behavioral strategies (see my earlier blog that includes using the elicit-provide-elicit model from Motivational Interviewing literature).
Benefiting from Collaborative, Interdisciplinary Treatment
Historically, medical care has not always been coordinated, nor has coordination been seen as critical with behavioral health care. For example, behavioral health providers understandably will not discuss a person’s care with a medical provider without a release of information, and even then may do so only once for a specific detail. That is, there is a lack of a free flow of information that can lead to more complete care. Contrast these experiences:
I’m caught running between them [the PCP and specialist care]; he said that, and she said something else, which doesn’t help much. (Gjesdal et al).
It takes a team approach to help a person live with pain…for every person it’s going to be different, it could be physical therapy or nutritional support group, a wealth of things…so it’s a combination of treatment and therapies with the person with pain at the center. (Webinar)
I’ve moved [my care] here [integrated care service at the VA] to get all the doctors together; if my orthopedic doc needs to talk to someone, she picks the phone up and calls them that day, and I get an answer. Outside doctors, you don’t hear for two, three, four weeks. (Driscoll et al, 2018).
Interdisciplinary care involves more than just having a group of providers treat one person, it implies recurrent, interactive communication and planning. Research has shown that true interdisciplinary care for chronic pain has better treatment outcomes (Scascighini et al, 2008).
Speaking of communication, by this point, you may have noticed the lack of the term ‘patient’ in the text. That was intentional. Reflect on your own experience reading so far – how did the noun ‘person’ shape the mental picture you may have had from the quotes? Might the noun ‘patient’ versus ‘person’ - even if subtly - have influenced your thoughts? I contend that simply having someone in our office as a ‘patient’ shapes how we judge them, label them, and critique their actions. Perhaps I should have said evaluate, diagnose, and conceptualize them…after all, we use semantics to remain clinical and professional. Unfortunately, our patients are trapped in bodies with chronic pain and do not have that luxury. I hope this blog has led you to reflect on how you think about your patients vis-a-vis what it must be like to live their lives. When we ourselves can recognize that our own words and biases influence our ability to connect and empathize, then we can truly work to provide person-centered care.
For more resources and information on the topic, check out this month's Chronic Pain spotlight page here.
The opinions in CDP Staff Perspective blogs are solely those of the author and do not necessarily reflect the opinion of the Uniformed Services University of the Health Science or the Department of Defense.
Diana Dolan, Ph.D., CBSM, DBSM, is a clinical psychologist serving as a Senior Military Behavioral Health Psychologist with the Center for Deployment Psychology at the Uniformed Services University of the Health Sciences in Bethesda, Maryland. In this capacity, she develops and presents trainings on a variety of EBPs and deployment-related topics, and provides consultation services.
References
Driscoll, M.A., Knobf, M.T., Higgins, D.M., Heapy, A., Lee, A., & Haskell, S. (2018) Patient experiences navigating chronic pain management in an integrated health care system: a qualitative investigation of women and men. Pain Medicine 19: S19-S29. doi: 10.1093/pm/pny139
Gjesdal, K., Dysvik, E., & Furnes, B. (2018). Living with chronic pain: Patients’ experiences with healthcare services in Norway. Nursing Open 5: 517-526. doi: 10.1002/nop2.160
Hambraeus, J., Hambraeus, K.S., & Sahlen, K-G. (2020). Patient perspectives on interventional pain management: thematic analysis of a qualitative interview study. BMC Health Services Research 20: 604. doi: 10.1186/s12913-020-05452-7
National Academy of Medicine Webinar (13 Feb 30; 1:30-3:3- p.m. ET). Retrieved from https://nam.edu/event/living-with-chronic-pain-perspectives-from-persons-with-lived-experience/
Scascighini, L., Toma, V., Dober-Spielmann, S. & Sprott, H. (2008). Multidisciplinary treatment for chronic pain: a systematic review of interventions and outcomes. Rheumatology (Oxford) 47(5): 670-678. doi: 10.1093/rheumatology/ken021.
In our roles as trainers at CDP, we want to help providers develop evidence-based skills for working with military connected populations. For me, one of the areas I provide training in is Cognitive-Behavioral Therapy for Chronic Pain. All of us, whether trainers or providers in clinical practice have our own perspectives and experiences, and yes, even biases about those who have chronic pain. Let’s face it, challenges inherent in treating those with chronic pain, such as slow or minimal progress, can lead to provider stress and frustration. It is important not to lose our empathy; after all, persons living with chronic pain are often themselves struggling and feeling hopeless. Here are three experiences they often describe:
Feeling invalidated and disempowered by the medical system
Persons living with chronic pain may experience unsupportive interactions with healthcare providers, feeling as though their concerns are not taken seriously or their treatment goals are not given credibility. Healthcare providers may even come across as dismissive, subtly or outright. Compare these experiences:
This terrible feeling of not being believed in and not being listened to. The only thing I have asked for is help so I can take care of myself. (Gjesdal et al, 2018)
I have been discredited so many times…they say my pain is because of my obesity. (Hambraeus, Hambraeus & Sahlen, 2020)
I think doctors need to be more sensitive and respect people’s opinions when they say something...it’s what’s going on with them and their feelings need to be validated. (Webinar)
[The PCP] took the time and talked to me, not just read my journal. He wanted to hear it from me. (Gjesdal et al).
I strive to apply the Golden Rule in my life – how would I want to be treated? Surely reading this we would all prefer to walk out of the clinic with the last experience. Even when we as providers observe that the person’s expectations for treatment outcome may be unrealistic, we can acknowledge that these hopes come not unexpectedly from fears and difficult experiences; we can find ways to broach this mismatch in an empathic and validating manner. Too, we can accept as persons with pain are asked to do that practically addressing the present situation can simultaneously coexist with hope.
Connecting Physical and Mental Well-Being
Persons with chronic pain may make a connection between their physical health and their mental health, and note how each affects the other. However, they may also focus primarily or exclusively on their physical health given how disruptive and distressing chronic pain can be. For these persons, how a provider broaches the connection can influence how receptive they are to readiness to discuss it, much less readiness to address it in treatment. Consider differences in these experiences:
He says it’s all in your head. Go to mental health. (Driscoll et al).
I think they don’t really differentiate between physical and psychological pain and their relationship…You can’t really separate those…If you have physical pain, it’s going to develop into psychological pain. (Driscoll et al).
You will not be given priority since it’s [chronic pain] not fatal. But because of the mental part of it, then it could actually be fatal. You’re in so much pain that you just don’t want to live anymore. But it seems like that’s not important to them. (Gjesdal et al).
I learnt some mental tools after a visit to the pain clinic, but it’s still me who has to do the job. I’m proud of what I’ve done. (Gjesdal et al).
We can be open to how we present information, use the person’s own examples and language, and check in on reactions to our attempts to help connect physical and mental well-being. This in turn helps provide motivation to begin behavioral strategies (see my earlier blog that includes using the elicit-provide-elicit model from Motivational Interviewing literature).
Benefiting from Collaborative, Interdisciplinary Treatment
Historically, medical care has not always been coordinated, nor has coordination been seen as critical with behavioral health care. For example, behavioral health providers understandably will not discuss a person’s care with a medical provider without a release of information, and even then may do so only once for a specific detail. That is, there is a lack of a free flow of information that can lead to more complete care. Contrast these experiences:
I’m caught running between them [the PCP and specialist care]; he said that, and she said something else, which doesn’t help much. (Gjesdal et al).
It takes a team approach to help a person live with pain…for every person it’s going to be different, it could be physical therapy or nutritional support group, a wealth of things…so it’s a combination of treatment and therapies with the person with pain at the center. (Webinar)
I’ve moved [my care] here [integrated care service at the VA] to get all the doctors together; if my orthopedic doc needs to talk to someone, she picks the phone up and calls them that day, and I get an answer. Outside doctors, you don’t hear for two, three, four weeks. (Driscoll et al, 2018).
Interdisciplinary care involves more than just having a group of providers treat one person, it implies recurrent, interactive communication and planning. Research has shown that true interdisciplinary care for chronic pain has better treatment outcomes (Scascighini et al, 2008).
Speaking of communication, by this point, you may have noticed the lack of the term ‘patient’ in the text. That was intentional. Reflect on your own experience reading so far – how did the noun ‘person’ shape the mental picture you may have had from the quotes? Might the noun ‘patient’ versus ‘person’ - even if subtly - have influenced your thoughts? I contend that simply having someone in our office as a ‘patient’ shapes how we judge them, label them, and critique their actions. Perhaps I should have said evaluate, diagnose, and conceptualize them…after all, we use semantics to remain clinical and professional. Unfortunately, our patients are trapped in bodies with chronic pain and do not have that luxury. I hope this blog has led you to reflect on how you think about your patients vis-a-vis what it must be like to live their lives. When we ourselves can recognize that our own words and biases influence our ability to connect and empathize, then we can truly work to provide person-centered care.
For more resources and information on the topic, check out this month's Chronic Pain spotlight page here.
The opinions in CDP Staff Perspective blogs are solely those of the author and do not necessarily reflect the opinion of the Uniformed Services University of the Health Science or the Department of Defense.
Diana Dolan, Ph.D., CBSM, DBSM, is a clinical psychologist serving as a Senior Military Behavioral Health Psychologist with the Center for Deployment Psychology at the Uniformed Services University of the Health Sciences in Bethesda, Maryland. In this capacity, she develops and presents trainings on a variety of EBPs and deployment-related topics, and provides consultation services.
References
Driscoll, M.A., Knobf, M.T., Higgins, D.M., Heapy, A., Lee, A., & Haskell, S. (2018) Patient experiences navigating chronic pain management in an integrated health care system: a qualitative investigation of women and men. Pain Medicine 19: S19-S29. doi: 10.1093/pm/pny139
Gjesdal, K., Dysvik, E., & Furnes, B. (2018). Living with chronic pain: Patients’ experiences with healthcare services in Norway. Nursing Open 5: 517-526. doi: 10.1002/nop2.160
Hambraeus, J., Hambraeus, K.S., & Sahlen, K-G. (2020). Patient perspectives on interventional pain management: thematic analysis of a qualitative interview study. BMC Health Services Research 20: 604. doi: 10.1186/s12913-020-05452-7
National Academy of Medicine Webinar (13 Feb 30; 1:30-3:3- p.m. ET). Retrieved from https://nam.edu/event/living-with-chronic-pain-perspectives-from-persons-with-lived-experience/
Scascighini, L., Toma, V., Dober-Spielmann, S. & Sprott, H. (2008). Multidisciplinary treatment for chronic pain: a systematic review of interventions and outcomes. Rheumatology (Oxford) 47(5): 670-678. doi: 10.1093/rheumatology/ken021.