Disbelief, Relationships, and the Stigma of Chronic Pain
February is the month of love. It is a time to give thanks for the important relationships in our lives. But those of us living with chronic pain sometimes feel our relationships are damaged, that we are no longer appreciated for our input, love, and admiration. Whether it’s true or not, we feel the impact. Sometimes we feel others don’t believe or understand us, putting a strain on our relationships. This feeling occurs often enough that researchers have taken a closer look in an effort to bring awareness and help us all do better.
The impact of disbelief on chronic pain
A narrative review of the impact of disbelief in chronic pain by Benjamin J. Newton, BS.c., et. al., was published in Pain Management Nursing in 2013_. _Newton and colleagues reviewed eight databases and full-text papers, and they found three recurring elements believed to contribute to our feelings of mistrust by others:
- Stigma and disbelief: Elements that lead to stigma and disbelief include lack of proof; female stereotypes; evoked psychological explanations; and accusations of complaining.
- Isolation: Loneliness results from disbelief, stigma, and avoidance by others.
- Emotional distress: The investigators found that feelings of guilt, anger, or opposition are barriers to health-related goals and can interfere with diagnosis and pain relief.
Anyone who feels their character is attacked can experience guilt, depression, and anger, as identified in this review. This reinforces the need to be heard and believed by everyone involved in any relationship. Communicating effectively is imperative to maintaining meaningful relationships and reinforcing our self-esteem.
Chronic pain and the family
Feelings of isolation, mistrust, or defeat are not unique to those living with chronic pain, but they are worrisome if we aren’t able to move on. Nurses understand this, and they understand chronic pain does not only affect the person experiencing it. It can affect our socialization, spirituality, and our finances, contributing to feelings of powerlessness, alienation, emotional distress, and isolation. In December 2012 Caryn West, et. al., sought to find if they could help reduce the negative impact of pain by including partners and families in assessment, education, referral, and treatment practices.
Using a purposeful sampling of younger and older adult partners, they conducted interviews asking questions that relate to the impact of chronic pain on the family. They found four recurring elements:
- Family loss and loss of their own interpersonal relationships
- Life changes in relationships, role reversal, and employment prospects
- Emotional impact of self-blame, anger, and fear
- Future plans and expected outcomes of illness affected the ability to survive the experience
Nurses value a holistic approach to developing and implementing strategies that support all of us and this study did conclude that including partners and families as part of patient centered care has a positive effect in outcome.
Also important to know is that feelings of isolation, mistrust, or defeat are not unique to those living with chronic pain, but they are troublesome if anyone in the relationship is unable to move on.
Resilience in families with a member with chronic pain
When anyone feels their feelings and experiences are validated, they do better. I learned this by interacting with others and gathering information for myself, which I later shared in books coauthored with Jeff Miller, Ph.D. My beliefs are validated in a 2012 study, “Resilience in families with a member with chronic pain: a mixed methods study” by C. West, et.al, in the Journal of Clinical Nursing.
Study authors found that while the impact of pain on families was high, the perceived impact was greater for those of us living with chronic pain. Families were found to be resilient, though we, as the patient, scored lower than our family on the resiliency scale. The investigators found that identifying strengths within the family was essential to our outcome and quality of health.
So, whether you are a person living with chronic pain, a partner, family member, or friend, if you are experiencing sadness or loss in this month of love, reach out. Make this month special.
“There is no love without forgiveness, and there is no forgiveness without love.”-Bryant H. McGill, Simple Reminders: Inspiration for Living Your Best Life
Celeste Cooper, RN, is a chronic pain patient, freelance writer, and contributor to the Health Central Community. She is also lead author of five published self-help books and enjoys writing and advocating for people living with chronic pain as a participant in a local patient leadership group and the PAINS Project. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.