Avoidance of clinical care is common for those who experience shame and stigma often to the detriment of care procurement. This avoidance can be an effort to protect from further shaming. For those who experience chronic persistent pain (CPP) avoidance isn’t always an option. Evolutionary, social, and structural elements can add clarity to this phenomenon.
From an evolutionarily perspective, we have come to count on our membership within our societal, interpersonal, and family groups for survival. Inclusion within our group ensures that we reap benefits of group membership. Principally, care when we need it. This is predicated on social contracts of reciprocity. Once well, we offer support to the group and others in return. A social group is more successful when many work towards the common goal of survival. Group members monitor for social cheating to ensure equitable resource allocation.
The loss of functional ability that can occur with CPP can make group participation difficult. Pain challenges our ability to fulfill our social roles, to maintain identity, participation and good standing within the group. People with CPP experience heightened “fear of negative evaluation,” or in other words a fear of shame and stigma. They can become chronically concerned with how others view them.
Avoiding clinical encounters, because of a fear of shame or judgment from healthcare providers, can result in a level of disconnectedness to others, in the service of protecting oneself from further shame. While this might suggest a reduction in attachment to others, CPP sufferers however, do not demonstrate less attachment. While being fearful of judgement, there is a necessity for those who are experiencing persistent pain to feel connected to others, in an effort to experience validation and legitimacy: to know that they will be supported by the group; to know that they will survive.
Social threats, like stigma and shame, (in this case within healthcare contexts) lead to increases in reports of pain intensity. However, these same social threats do not necessarily increase physical pain expression. An individual may experience more pain, but may show it less. This may compound the perceived ‘social cheating’ often assessed by CPP care providers, while more pain is felt by those who are already hurting. For those with CPP, it is common that no specific pathoanatomical source is found to explain their pain experience. As a result, the need to restore standing to elicit care depends on structural requirements of an affirming diagnosis.
Our own identities as healthcare providers are challenged when we don’t understand a patient’s condition. Observers favour anatomically-oriented diagnostic information when assigning their own sympathy and desire to help an individual experiencing pain. Observers perceive lower pain assessments when evidence of a concrete diagnosis is lacking. This can lead the care providers to be less empathetic towards the pain sufferer. Sometimes, reported pain experience is not believed, or questioned, in the absence of a biological source. A lack of belief in a person’s suffering can lead to a reduced or narrower scope of care offered. Delegitimization is a logical result of this dynamic. To the person suffering, it can lead to feelings of shame, stigma and injustice. Shame signals that an “othering” has occurred and that we are at risk of being shunned by our group, and, hence, will not receive the care we believe we need and deserve.
Those experiencing CPP work to restore and protect their social standing. To be held in higher regard means sustainability within the group and safety from excommunication. But diminished abilities stemming from pain may impact this. The decision to approach or withdraw from healthcare can be understood as differing strategies to protect the social self. Does one step forward and seek care, and in doing so validate oneself and one’s experience of CPP? Or is the emotional risk so great, that it feels safer to retreat and avoid care, even when this might mean more physical harm to the self?
Devra Joy Sheldon, Physical Therapist and Mentor