They Don’t Believe Me


This module highlights the importance of utilizing effective listening and communication with patients with Sickle Cell Disease.

This module typically takes around 90 minutes to complete. A more detailed module structure can be found in the SCD Facilitator’s Guide.


  • Common myths about pain management/addiction/drug-seeking behaviors
  • Sub-group Discrimination

Learning Objectives

(Refer participants to Learning Objectives for this Small Group that can be found in their Participant Notebook.)

  • Understand the experiences people living with SCD related to pain and suffering.
  • Identify barriers to adequate pain assessment/treatment
  • Appreciate how issues of race, class, and ethnicity can shape perceptions and assumptions about patients in regard to their experience and treatment of pain.
  • Identify strategies for addressing barriers to addressing pain and suffering for people living with SCD.

Opening, Introduction of the Day, Debriefing

  • What new insights did you gain from the Plenary on Palliative Care?
  • What lingering questions do you have now?

Show Film #2: They Don’t Believe Me

Reflections and Discussions

Individual Reflection

Give 3 minutes for individual reflection on the film. Ask participants to write responses to the following questions:

  • What are your initial responses to this film? What surprised you?
  • What are your thoughts about what it means for patients to feel that their experience of pain is not believed?

Group Discussion

  • What did you learn from this film about how patients are thinking and feeling about their illness, prognosis, and relationship to the health care system? (Prompts:
    • Loss of confidence in ability to control disease
    • Frustration at not being heard and respected
    • Anger if suspects that the staff believes an addict
    • Distrust in the medical system
    • Isolation – Enhanced because patients feel like they aren’t believed (suffering in silence))
  • Why are some patients’ experiences of pain not believed? (Prompts: Pain is invisible, especially as people get older, may have developed tolerance so need higher doses/patients know their doses so raises suspicion)
  • In the film, did you notice a difference in treatment between children and adults?
    • Was it surprising to you that Davon, a child, had experienced this treatment?
  • Why are clinicians concerned about drug addiction in this situation? To what extent are these concerns warranted?
  • How do you respond to Sophie’s comment about “it’s not the role of ED clinicians to worry about addiction”? (Prompts: What IS the role of the ED clinician in assessing and treating patients with whom they suspect substance abuse? What is the role of other clinicians in the interdisciplinary team in addressing these concerns? What is the impact of clinician concerns about substance abuse on the care of patients with SCD?)
  • How do you respond to the suffering experienced by patients with SCD? (Prompts: Helplessness, guilt, compassion, blaming patient, withdrawal, distance (“not like me”), burnout)
  • What do we say to each other but not to the patient? (Prompts: Non-compliance, things said outside the patient room, gossip, characterization, labeling.)
  • What labels do we give to patients who may not respond to advice or treatment in the way we prefer?
    • What is the impact of these labels on how we provide care?
    • How do these labels affect our relationship with patients or attitudes toward patients?
    • How do these things affect trust?
  • How do patients accommodate in their behavior to get what they need? (Prompts: Importance of positive self-presentation (e.g. dress professionally): classism; changing their behavior or inflating pain scores in order to get what they need (pseudoaddiction))
  • When you reflect on your own doubts about validity of pain and attitudes towards patients:
    • How do clinicians contribute positively/negatively to the lived experience of patients?
    • In what ways do clinicians “suffer” as they provide care to these patients?

Application to Self and Home Institution

  • What role can palliative care play in addressing some of these issues:
    • Physical pain?
    • Psychological pain?
  • Regarding what we have discussed during this group, what change would you like to see/make at your home institution?

Agenda items: Refer participants to their agenda, noting the next event is a Plenary on the Ethical Landscape related to Sickle Cell Disease.