Chronic pain is a significant contributor to disability among Americans, with an estimated 51.6 million people experiencing chronic pain that lasts longer than three months. (Rikard, Strahan, Schit, & Guy, 2023). Regardless of its source – whether medical or unexplained origin – chronic pain can have detrimental effects on physical, psychological, and social well-being, significantly impacting the quality of life for those affected. Due to these detrimental effects, mental health therapists are essential in helping chronic pain sufferers manage their condition. However, many chronic pain sufferers do not seek mental health services due to feeling unaccepted, disbelieved, and disempowered by mental health providers (Darlow et al., 2013). The best way for mental health therapists to understand the impact of chronic pain is by learning directly from those experiencing chronic pain, who can provide insights into the challenges associated with chronic pain (Apkarian, Baliki, & Geha, 2009; Suso-Ribera, Camacho-Guerrero, McCracken, Maydeu-Olivares, & Gallardo-Pujol, 2014).
Even though exploration of the lived experiences of chronic pain sufferers may uncover potential approaches that therapists can use with clients experiencing chronic pain, there is limited research (Osborn & Rodham, 2010). To contribute to this gap in the chronic pain literature, I interviewed 10 individuals with chronic pain who were between the ages of 42 and 65 and currently lived with chronic pain. Chronic pain durations ranged from four to 10 years. I asked open-ended questions that centered around the challenges of living with chronic pain.
Stigma of Chronic Pain
All interviewees reported stigma, ranging from doctors not believing pain intensity to challenges obtaining pain medications to friends not believing their chronic pain.
One interviewee explained, “I feel like a criminal picking up my meds. Yes, they are opioids, but I am not an addict; I am in pain…Every time I pick up my meds, the pharmacy tech gives me the ‘disgusted’ look.”
All interviewees limit discussions with family and friends regarding their treatment because some view them as “druggies” or “just faking it to get pain pills.”
Another interviewee said, “Since I do not have a visible injury, it is difficult coping with the misunderstanding from others. Some question whether I am lying about my pain intensity.”
Another interviewee reported harassment when using Costco handicapped parking spaces. “People say I am lying to get parking spots since I do not look handicapped.”
Isolation
As interviewees expressed, stigma results in isolation and a reduced support network. All interviewees reported their chronic pain as hidden and that they are resigning to the pain, enduring living with the chronic pain, and reducing their social activities. They felt unsupported and isolated, with one individual mentioning, “I feel very lonely during my doctor visits since he is pain-free and doesn’t understand what it feels like to be in constant pain.”
Another interviewee shared, “I am so tired of hearing, ‘I know what it is like to be in pain,’ and then they follow up with, ‘I hurt my shoulder, and I was in pain for four weeks.’ They have no clue what chronic pain is like!”
Others discussed feeling discomfort with increasing dependence on others. One interviewee mentioned, “After asking my adult son for help shopping, he gave me the impression that my pain was not really that bad, and I just need to work through the pain. Hence, I am reluctant to ask family for help; I just work through the pain.”
Moreover, interviewees mentioned experiencing guilt and social withdrawal when asking for help. One stated, “I don’t like others expecting too much from me, but I also don’t want them to feel sorry for me. Weekly, I go for a walk with a friend. I walk a lot slower. I know she is frustrated with not being able to walk faster, but if I try to walk faster, she tells me to slow down and save my energy.”
Spouses
Eight married participants described the frustration their spouses experienced with the increased household duties and physical tasks.
One interviewee explained the frustration she and her husband experience with caring for the kids. “I wish I could hold my kids more and read to them. When my husband is playing with them or reading to them because I have too much pain, my momma heart breaks. I want to be the one playing. I know my husband wishes I could do more with the kids; he works and comes home to kids eager to play.”
However, the eight participants reflected on how understanding their spouses are about their chronic pain. “My wife always knows when I hurt, or my energy has decreased. She is so empathetic but also encourages me to push myself a little more when I am in pain.”
Medical Providers
Interviewees reported frequent interactions with medical providers where their pain and credibility were questioned. After repeatedly telling her primary physician of constant fatigue, one interviewee explained, “My doctor said to eat healthier and exercise more. She implied that walking would reduce my pain.”
Another participant reported, “My doctor thinks I am a drug-seeking patient. He does not prescribe enough to last one month. I must be stingy with my pain meds, so I don’t run out.”
Mental Health Therapists
Interviewees reported varied experiences with mental health providers.
“Overall, my experience has been hit or miss. It is challenging finding a therapist who takes me seriously.”
“I have seen psychiatrists and therapists; half the time they act like I am a criminal when I discuss my treatment or that I use medicinal marijuana for pain.”
Other interviewees reported more positive experiences. “It was nice to discuss things most people don’t care about, or I cannot discuss with others without being judged.”
“Get away from pills and focus on lifestyle changes. Are my coping habits healthy, and are there ways I can change my mindset to help manage my pain? My therapist is here for me and can be counted on.”
“I need a sounding board, someone who is an outlet for me to air out my frustrations. I can tell my therapist anything, and she did not judge; it was so relieving.”
Rejection
All interviewees compared themselves to others, viewing themselves as less than.
“I feel like I have failed since my body is not doing what I want it to do.”
Another interviewee said, “I am not living up to my own expectations, and I feel like such a failure. I don’t blame people for not wanting to be around me…I can’t do anything because of the pain!”
Another interviewee who is a mom said, “No one wants to be around someone who is always in pain. I tell my husband he sticks around because he must. I hate that part of me; my pain hurts myself, my husband, and my kids. No one wants me.”
An interviewee said, “I am so defective, this body. I can only do the bare minimum to take care of myself. I feel like I am broken. Can I get a refund? That is a joke.”
Pets
Eight interviewees own at least one cat or dog. The interviewees said their pets simulate human relationships.
“It is interesting how animals are like people with their personalities.”
“Dogs don’t have any judgments about you. It is refreshing because humans, even when we have good intentions, we judge each other.”
The interviewees reported increased psychological wellness and decreased pain, depression, and anxiety. One interviewee said, “I know my dog is an animal, but I see him as a family member, my best friend.”
Another interviewee called his dog, “My fur baby, and I am a dog parent.”
All interviewees viewed their pets as emotionally supportive and described their pet interactions as comforting and supportive. One interviewee said, “My two cats can sense physical or emotional distress, and they jump in my lap to comfort me.”
Another interviewee explained, “My cats look at me in a way like they are saying, I know you hurt today; let me love you a little more so you feel better.”
Another interviewee mentioned they take their dog everywhere, “from the grocery store to trips.”
“My dogs are amazing! I get excited coming home and seeing them no matter how tired, painful, or aggravated I feel.”
Conclusion
As awareness of psychosocial factors in chronic pain increases, so does the need for mental health therapists to familiarize themselves with chronic pain. Insight into the lived experiences of chronic pain sufferers could enable therapists to understand and support clients with chronic pain. Given the relative lack of research on the lived experiences of individuals with chronic pain, further research would enhance understanding and training in this area, ultimately improving support for individuals suffering from chronic pain.
Heidi Hillman, PhD, BCBA-D, LMHC, is Associate Professor at Eastern Washington University. For more information, Heidi can be reached at hhillman@ewu.edu.
References
Apkarian, A. V., Baliki, M. N., & Geha, P. Y. (2009). Towards a theory of chronic pain. Progress in Neurobiology, 87(2), 81-97.
Darlow, B., Dowell, A., Baxter, D. G. G., Mathieson, F., Perry, M., & Dean, S. (2013). The enduring impact of what clinicians say to people with low back pain. Annals of Family Medicine, 11(6), 527-534.
Osborn, M., & Rodham, K. (2010). Insights into pain: A review of qualitative research. Reviews in Pain, 4(1), 2.
Rikard, S. M., Strahan, A. E., Schmit, K. M., & Guy, G. P. (2023). Chronic pain among adults: United States 2019-2021. Morbidity and Mortality Weekly Report, 72, 379-385.
Suso-Ribera, C., Camacho-Guerrero, L., McCracken, L. M., Maydeu-Olivares, A., & Gallardo-Pujol, D. (2014). Social problem-solving in chronic pain: An integrative model of coping predicts mental health in chronic pain patients. Journal of Health Psychology, 21(6), 1015-1025.
