Many parents are emotionally shattered when they receive the diagnosis that their child suffers from sickle-cell anemia. This initial reaction can settle into a set of negative attitudes that make it harder to cope with the illness. Here are three negative reactions to guard against:
1. Do not assume that your child is going to die.
Since sickle-cell anemia has a high death rate, many parents give up on their sickler children soon after they are born. This attitude subconsciously leads them to give less than their very best for the child. In effect, they are just waiting for the child to die, which in turn becomes a self-fulfilling prophecy. Sadly, the child may unconsciously imbibe this attitude, and give up the fight to live. The child’s belief that he or she will live wanes, as does the will to live.
In order to combat this negative attitude, hold on to the positive examples of those living with sickle-cell anemia. Join forums in order to keep up with how other parents and sufferers are coping, and remind yourself of the increasing number of positive outcomes.
2. Do not encourage prolongation of the sick role.
Caring parents may tend to shelter the sick child, thinking, “This child must be spared this and that. He or she is sick.” This may encourage the child to embrace the sick role, along with the rewards of increased attention and avoidance of unpleasant chores.
The child may get the impression that the best emotional rewards come when they are ill. They are sick, and therefore “special”. They may even become very spoilt children.
Scientific studies show that even adult sicklers enjoy the added attention and sympathy from family, friends or partner when experiencing a painful crisis, which may encourage or prolong the crisis.
By all means, give the child needed attention and care when they are ill or have an attack. But to combat a preference for the sick role, consistently reward “well” behaviour, such as when the child successfully completes tasks that are part of normal life.
My mother never rewarded the sick role. She did everything for me when I was ill – no effort was too great. But she was much more excited when I had good grades, or learnt how to cook, or made strides in my faith. I was the eldest, and I was never excused from taking responsibility for the younger ones.
In short, my mother signaled to me that living was much more rewarding than being sick. Being ill was never a reward for me. I looked forward to getting well, and to all the things I could do when I got well, and I worked hard towards getting and remaining well.
3. Do not settle into a depression.
Many parents succumb to a depression or deep sadness, or at least a subdued mood, when they learn that they have a chronically ill child, whose condition is incurable. They feel the obligation to maintain this depressed mood because of their child’s illness.
However, this is not necessary. Of course, there will be sad and frustrating times when the child repeatedly falls ill, but there is no need for sustained mourning. Every child benefits from a happy family, especially a child that is chronically ill.
Have fun with your child and with the rest of the family. Let the child have fun with its siblings. Do all the silly and enjoyable things that make family so special.
This will create strong family ties that will sustain the child through tough times. Moreoever, a habit of happiness is one of the best sources of motivation to stay alive.