The effects of traumatic pain memories on current pain experience in men with hemophilia

Hemophilia is a bleeding disorder characterized by recurrent bleeding into muscles and joints. Many people with hemophilia experience multiple traumatic painful bleeding episodes, meaning that pain is often a significant problem for people with hemophilia, with a potentially high prevalence of posttraumatic stress and posttraumatic stress disorder symptoms. Current pain treatments are often ineffective and do not consider pain memories, which are experienced by almost half of people with posttraumatic stress disorder and which has not been explored in people with hemophilia. To fill this gap, 14 semistructured interviews with men with hemophilia were completed between November 2022 and January 2023 to explore their lived experiences of pain relating to their hemophilia. Data were analyzed using reflexive thematic analysis. Three overarching themes were constructed from the data: “trauma histories,” “pain management,” and “impact on the present.” Findings show that pain experienced by people with hemophilia is complex and does include a memory element for many individuals. Pain memories are clear and vivid and include visual, somatic, and emotional elements in intricate detail. Pain can also be experienced in the present when experiencing a pain flashback, and pain in the present can be a trigger to recalling and re-experiencing pain memories from the past. Self-taught active dissociation from pain, imagery, and distraction were described as useful pain management strategies. Findings from this study have implications for clinicians and service providers because current pharmacological and physical pain management techniques may be ineffective when pain memory is involved. Future interventions should consider how pain management is advanced for people with hemophilia and how hemophilia services become trauma informed.