By Ajibade Damilola
Dealing with the symptoms of Sickle cell Disease (SCD) is a great challenge, however getting this done and rightly remains crucial for patients. It is one essential part in the successful treatment of SCD in patient. One major symptom of the disease in patients is severe pain in most body parts. Pain is known to have telling major impact on a SCD patient’s quality of life. In recent times, health care givers are known to provide services to families affected with sickle cell disease. This has become imperative, in order for families of patients to help in the maintenance, acute care, and monitoring of disease-modifying therapy in persons with this condition.
Despite this, the challenge for the treatment and care for SCD patients remain high. The problem has been identified to be majorly stigmatization and a relegation of SCD patients to second class humans. This stigmatization against patients not only exists at the communal level, it is mostly rampant within the nucleus of the family. Hence, this has led to SCD patients not getting the best attention required to help lead normal healthy lives, and in many cases, patients are left to suffer until the situation becomes dire before getting the desired level of attention needed. It is instructive to note that, the pain of these patients was not self inflicted, its often brought upon them by poor family choices but they suffer for the careless and poor decisions made by those before them. More sickening is the fact that they are made to feel like it is their fault, thereby leading to low self esteem in the individual.
This level of stigmatization from the family, from persons who are supposed to be sources of hope and motivation, and their ‘loved ones’ is what is carried to the communal level. When school mates see the treatment given to an individual suffering from SCD, they either take the stigmatization to the next level or just follow the examples shown by brothers and sisters, fathers and mothers. At the communal level is grown hostility, animosity and disdainful treatment towards the individual. From school mates, to teachers, to parents of class mates, the treatment is universal and normalized. Hence SCD patients all their lives are made to fight pain on double fronts ie having to fight the pain caused by the sickness; and fighting the pain brought about by stigmatization from various sections of the community. The psychological trauma comes along with the stigma meted out to them.
One would expect (naturally too) that SCD patients will find true friendship, care and support from the medical care givers or health practitioners (doctors and nurses), seeing as their training and professional ethics states that patients must be treated equally, with love, care and respect, this should be a place where the patient at least finds comfort and is given serious attention. However, if we must be sincere with ourselves, in regards to the conduct of some clinics in the Nigerian scene, very few do the right thing. Rather, than being friends, they take the harshness and hostility to another level. This is especially true of the nurses, than the doctors. It is noteworthy that in their case, it is not totally their fault, the low ration of patient to health practioners in Nigeria may be a cause for this, hence the nurse has to attend to many patients than standard requires him/her to attend to. The resultant effect is a rush, harsh and vile and with little attention to details kind of service. Another added factor responsible for this, is that most hospitals in Nigeria (government and private) do not meet the necessary requirements of operation, in terms of infrastructure, structure and staff training. The result is an unprofessional environment which is not motivating to its Staff thereby building up to frustration, the aggression birth by this frustration is usually directed at patients with the highest sufferers usually the most vulnerable amongst the vulnerable with SCD patients falling under this category.
As a result, persons who are suppose to be the most loved, cared for and supported, end up being at the end of one of the most toxic form stigma. The religious leaders and houses are no different. Situations where, SCD patients are made to feel like there are possessed by evil spirits that must be cast out still remains a norm despite concerted efforts to bring awareness on sickle cell anemia to the know of all and sundry. In some cases, the level of stigmatization has degenerated to name tagging some patients as “Abiku” ie one who is born to die at a very young age. To prevent this in some cases, incisions (painful ones) are made on the body parts of the individual. This is done with the claim that such a child will be rejected by his spiritual family should he/she die. Has this been effective? Your guess is as good as mine, for the clarity of doubt as to what my guess is, my answer is it has not been effective. We have only subjected these patients to more level of pain both on the inside and outside.
This is the level of stigmatization that a SCD patient goes through every day with little or no reprieve. It is also worthy of note that some patients are lucky, they meet with love and care from family members and friends. This is why education and enlightenment is required, in most cases an enlightened individual better understands the messages passed across on sensitization. However, with the present reality in Nigeria and Africa in general in relation to literacy levels, we must continue to do with rigorous sensitization at the communal and grassroots level and also double up on Preventive sensitization and corrective sensitization.
We must salute the warriors (SCD patients) who have been known to fight all their lives, we must make commitments to lighten their loads and help them along on their journey. They are no less humans than you and thus deserve the respect that every other human being craves.
Ajibade Damilola is a radio journalist and convener of Damilola Sickle Cell Foundation (DSCF), E-mail: email@example.com, Tweets: @deesicklecell