The Guilt of Living with Chronic Pain
The Guilt of Living with Chronic Pain
Questioning the legitimacy of a person’s pain induces guilt and worsens pain.
Posted December 5, 2021 | By: Arash Emamzadeh
- One in five people suffer from chronic pain conditions, such as lower back pain, migraine headaches, fibromyalgia, and arthritis pain.
- Chronic pain patients may feel guilty or even feel like a fraud when others, including doctors, question the legitimacy of their pain.
- Health providers need to validate and reassure chronic pain patients while working with them to find treatments that work.
A recent study by Danijela Serbic and colleagues, in press in the British Journal of Health Psychology, suggests guilt in chronic pain is associated with “pain and pain interference, functional impairment, and poorer psychological and social functioning.”
But why should chronic pain patients feel guilty? How does guilt affect pain symptoms? And how can we help pain patients avoid guilty feelings?
Before we consider some answers provided by the study, let’s first define chronic pain.
In the case of acute pain or short-term pain, these experiences are typically related to tissue damage (e.g., stubbing one’s toe). However, in chronic pain or long-term pain—pain lasting three months or more—clear tissue damage is not always present.
Examples of chronic pain conditions, or illnesses sometimes associated with long-term pain, include fibromyalgia, chronic low back pain, irritable bowel syndrome, post-surgical pain, neuropathic pain (e.g., related to diabetes), cancer pain, arthritis pain, and headaches and migraines.
As noted, the link between chronic pain and tissue damage is weak. This may be one reason some physicians seem unwilling to accept that patients complaining of chronic pain are suffering from real pain. And why many chronic pain patients research their symptoms to convince their health providers of the genuineness of their pain—to legitimize their suffering and pain-related behaviors.
But chronic pain is real. It affects one in five people around the world and is linked with depressed mood, negative changes in identity and social roles, and disability. It is also highly costly—in terms of medical costs, informal care provided by the family, absenteeism or reduced productivity at work, etc.
Chronic Pain and Guilt
Many people living with chronic pain experience pain-related guilt. Why? Let us look at the research.
To synthesize the available evidence on the role of guilt in pain, Serbic et al. searched multiple databases and selected a final list of 12 investigations for the qualitative synthesis (410 participants) and six for the quantitative synthesis (2,316 participants)
Synthesis of the qualitative evidence revealed these guilt-related themes:
- Others assuming the patient’s pain condition is not legitimate. Patients who had not received a diagnosis yet or were exposed to opinions questioning the legitimacy of their condition reported feeling guilty or feeling like a fraud (i.e. as if they were faking their symptoms). Example: The pain “made me feel kind of guilty… You know, there’s not real proof with back pain, anybody can say my back hurts.”
- Others assuming the person is not managing the condition well enough. Some people living with chronic pain felt guilty for not complying (or being able to comply) with the treatment. Example: “You feel like you’re letting the doctor down.”
- Assumptions regarding how one’s actions affect others in terms of the person’s inability to work or fulfill social roles (e.g., parental duties or duties as a coworker). Example: “As your children grow up with you in pain, you are likely to feel guilty because they have to face issues and shoulder burdens that other kids don’t.”
The results of the quantitative synthesis were grouped into the following categories:
- Pain and pain interference: Pain-related guilt was positively associated with pain behaviors and with pain interference with relationships, sleep, work, etc.
- Functional impairment: Guilt correlated with worse physical functioning and greater fatigue and disability.
- Psychological functioning and coping strategies: Pain-related guilt was linked with diagnostic uncertainty, lower pain acceptance, and greater pain catastrophizing (more magnification, rumination, and helplessness).
- Psychological functioning and emotions: People who experienced pain-related guilt tended to feel anxious, depressed, and angry.
- Social functioning: Guilt correlated with social isolation and perceived criticism (e.g., by treatment providers).
- Demographics: Here, the results were inconsistent. While one investigation found women felt more pain-related worry and guilt, another investigation found no gender differences.
In Pain and Guilty
In summary, guilt in chronic pain patients is linked with worse pain, physical functioning, social functioning, and psychological adjustment.
Though “no causal path can be inferred,” the authors note, “the evidence indicates towards a path in which the combination of persistent pain and impaired function results in a series of self/other evaluations, which lead to guilt, and that the presence of guilt exacerbates distress and further impairs relationships.”
Perhaps pain-related guilt develops in the same way PTSD-related guilt develops. This means chronic pain patients experience guilt when they interpret a painful experience (or its consequences) as a violation of their personal standards of behavior. Or interpret it in a way that makes them feel responsible for having caused harm. For instance, individuals living with chronic pain may feel guilty because of the belief that they are harming their children, inconveniencing their friends, neglecting their duties as employees, frustrating and annoying their doctors, and so on.
Helping Patients with Chronic Pain Feel Less Guilty
So, how can we help those living with chronic pain reduce their guilt?
First, more health providers need to be taught how to provide validation and reassurance and be taught how to make their patients feel respected, heard, and understood. It is not helpful to invalidate patients’ experiences, accuse them of malingering, or suggest they must have a mental illness (e.g., hypochondriasis). Instead, physicians need to work with their patients to better understand the causes of these pain conditions and to find an effective treatment.
Chronic pain patients face societal stigma too. To address social stigma, we must educate the public about chronic pain. And to empower patients to resist self-stigmatization (i.e. to resist agreeing with and internalizing stigmas) and instead move toward accepting and validating their own pain experiences, regardless of the opinions or behaviors of others—be they healthcare providers or society at large.