“Ghost” pains, really?

The most common rare genetic disease in France (more than 13. Consequently, 000 people affected), sickle cell anemia can be cured by a bone marrow transplant. In addition, At the request of health professionals. However, 2 philosophers and a psychologist spoke with patients who benefited (11 women and 10 men) and with their caregivers, between May 2023 and January 2024. Moreover, Their reportpublished on the site The life of ideas. Consequently, questions the distinctions between treatment (cure) and support (care), pain and suffering.

Drépanocytosis is characterized by painful crises occurring in an unpredictable and repeated way. In addition, Pain can be very intense, but often remain ” Invisible ». Therefore, Indeed. become familiar, and therefore ” feared and scary “, They are hidden “ghost” pains, really? by patients, until they do not give any manifestation on the face. This is a disconnection strategy ” Between the painful body. the suffering spirit », Similar to the strategies implemented in intense trauma. This is what leads some caregivers to question the reality of pain, while it is extremely strong. When recognized. this pain can be difficult, if not impossible to relieve, which can ” crisis “Health professionals, who feel helpless and incompetent.

Hematopoietic stem cell transplant is the only curative treatment of sickle cell anemia. Few patients benefit from it. Gold, ” It is not uncommon for some patients to continue to feel pain after grafting. There is a hematological healing, but a painful complaint persists, which some health professionals have trouble admitting. Patients explain that up to the transplant. their whole life was structured “ghost” pains, really? by the possibility of crises, and by tactics aimed at preventing their occurrence (drinking water, not exposing themselves to cold, sun, do not swim, etc.). After the transplant, everything happens ” As if, without the painful crises, part of themselves, constituting their identity, was lost. ” Moreover. “ The feeling of betraying your patient identity as well as the community of sickle cellos is particularly deep due to the differences in situations that the transplant comes to introduce within families or communities of interconnection, but also due to the very limited number of grafts practiced in France. »

In short, patients are healed, but continue to hurt and suffer. Some professionals speak of “ ghost pain “, Like what’s going on in amputees. Patients reject this expression: ” The term ghost can evoke something unreal, “ghost” pains, really? a product of the imagination. In some patients, this expression strengthens the feeling of not having been believed or taken seriously during past crises. However, for those who live, these pains are very real. »

Patients must learn to live “ Not without illness, but with the same disease now experienced otherwise. “The challenge for health professionals is to build a new care model. combining treatment and support, mobilizing” A wide set of various practices, relationships and institutions and interdependent ”, whose care of a medical nature, certainly essential, is however “Only an occurrence. »