The text is about the psychological consequences of the sickle cell anemia. An acute pain can summarizes the experience of sickle cell anemia. The psychic pain, more disseminated, extends to all patient’s life.
The sickle cell anemia is a serious and genetic disease, which affects the family life, the family line and the patient’s progeny. Its symptoms are unpredictable. This blood pathology affects mostly black people and profoundly change their social life.
To give life and disease : a difficult paradox
In France, we systematically propose neonatal screening for the high risk infants.
The disease announcement divides the lifetime in two parts : before the disease with no sufferings and after the announcement of the disease, concern and anxiety. The family’s reactions face to the diagnostic announcement are different but the family’s story seems to be articulated around the announcement.
The invisibility of sickle cell anemia symptoms causes more fantasies around the disease and its causes. Moreover, this disease affects mainly the black migrant people and the discover of the disease for instance can revive the insecure and precariousness feelings during the migration.
The medical environment intervenes extremely early in the parent-child relationship. Consequently, it is very important to offer to the family the possibilities to speak about their misunderstandings and concerns about the disease in order to support them in their early parent-child relationship. Furthermore, unconscious and unresolved childhood issues can resurrect with the children announcement disease.
The first painful crisis roughly reminds to the parents and children the sickle cell anemia existence. This time is scarred by strongly emotional distress, and the incurability of the disease is reminded to the parents and children. The violence of the physical suffering creates a rupture, an absolute uncertainty, with the threat of annihilation and senselessness of death. Often, there is catastrophic experience of the disease, with guilty feelings and helplessness both can increase the anxiety of the parents.
The parent’s roles are more important in the medical and psychical care of their children. The quality of the parent’s observations and their treatments (for example in case of high temperature) depend of their « acceptation » of the disease.
A psychological care can avoid extreme reactions like the denial of the disease or on the contrary : seeing the child just like a seriously ill child.
The child who suffers from sickle cell anemia has to face a terrific reality into his body but also has to live with comportments and an emotional investment of the members of family lead to disease.
The pain and its psychological impacts
The symptoms of the disease vary in intensity and severity depending on the patient. More often, the pain is sharp, surprising and frightening. The pain appears as nonsense and we cannot make it run away. Very often, the subjects construct an explanation by taking elements of their history in order to put a meaning on the lived experience.
« When I am hurt, it’s like someone was crushing my bones with a jackhammer ».
There is violence and intensity in the corporeal experience.
The psychologist then accompanies the patient in an attempt to make sense in order to enable him to live the illness as a subject and not as an object. Physical pain is sometimes accompanied by sadness or even depression. The patient is also crossed by fear, anxiety and feeling of loneliness. Sickle cell disease is a serious and life-threatening disease with infectious risk, which triggers death anxiety at each painful attack.
Tiredness : an insidious symptom
Tiredness, lack of energy, and physical impairment are others direct consequences of the disease, which can lead to feelings of sadness, rejection, and guilt. These consequences extend from the private sphere to the social sphere of the patient. Often patients hide their disease, especially to their employer and colleagues. It raises the question of what place do we give to sick people in the world of work?
Special features of sickle cell disease : hereditary disease and blood disease
On the symbolic level, heredity and blood are some very close notions that can be confused. This sometimes results in wrong understanding of the mode of transmission. This is not as sexually transmissible disease.
Blood carries a very strong emotional charge. Life, fertility, power are associated with blood, the soul is the equivalent. To have sick blood is to have unclean, dangerous blood. The emotional life is sometimes reduced, with the fear of rejection of the other in the foreground.
Everything about inheritance is borrowed from a powerful imagination. The nursing-staff then have an essential role of information.
Heredity also raises the question of the desire of a child with the risk of transmitting the disease.
Diseases from Africa : some cultural specificities
Some families from Africa decided to migrate to look after their child, others had to separate themselves from the sick child and send him to France with an aunt or a cousin. The consequence is a major upheaval in the family organization and the life of the child.
Generally, there is complete isolation of the family facing the disease. Migration leads to a certain break that has important consequences on the experience of the disease and on the disease itself.
It is also sometimes necessary to take into account the traditional representations of the disease. It is essential to take into account transculturality which can make the construction of identity complicated.
The hospital : a necessity :
The diagnosis can be made very early so the hospital can become a regularly attended place that can be lived in a singular way.
Child’s experience : During hospitalization, the child is separated from his / her parents. Often young children are struggling to express their emotions, feelings and anxieties. The game and the drawing can be a good support for a form of elaboration of the suffering and the staging of the lived experience. The child becomes an actor of the situation.
Adolescent reactions : Adolescence is a time of deep psychic reorganization that sometimes leads to attitudes of non-observance of treatment. This behavior is risky for the health of the patient and the relations established with the nursing-staff. The hospital environment can be perceived as threatening, each hospitalization can be a source of anxiety for the patient. Aggressiveness, opposition or even fugues or on the contrary withdrawal, mutism can be translations of malaise.
Adult words : The sickle cell anemia is a genetic disease, uncommon in mainland France and unknown. Sometimes, the patients have more knowledges about disease than nursing-staff themselves. During painful crises, the patient receives morphine and analgesic but sometimes pains persist. It is important to tell/ underline that pains are invisible.
The proposed treatments :
When the risk is vital the proposition of an intra-familial transplant can be made. When no family member is compatible, it can be common for parents to have a new child to “save” their sick child.
It poses a number of questions. Another possible treatment is blood transfusion or hydrated. This technique is not without constraints or risks. Sometimes it is not effective either, one is then in a therapeutic impasse, which is then strongly anxiogenic.
CHAUVIN Chloé
DAHÉRON Mélissa
GUICHARD Louise
