Of course thalassemia causes psychological problems for the parents, the thalassemic child, and their brothers and sisters. We are not psychologists, and each family has their own psychological strengths and weaknesses, but there are some common problems we can discuss.
When parents are first told their child has thalassemia they are completely shattered. They are upset by the severity of the disease and the fact it lasts life-long. They also feel that they are responsible. Because they are thalassemia carriers: and in any case, parents always feel responsible for things that happen to their child. So parents usually feel guilty in addition to their other problems.
Even when parents have got used to the idea of thalassemia. There are a lot of emotional challenges in bringing up a thalassemia child. They have to steel themselves to accompany their child through all the blood tests and blood transfusions, and when the child first starts to ask questions, they have to find some way to explain the disease. If they don’t get enough help, parents can make mistakes about these things. For instance, there is a strong temptation to over-protect a thalassemic child, and this conveys just the opposite message to the one they want. If parents are over-protective, the child feels that it must be in constant danger, and because it can’t see what the danger is, it becomes anxious about every little thing. We always recommend parents to treat their thalassemic child as normally as possible, including the usual amount of discipline, so that the child will feel it really is normal. But it can be hard to strike just the right balance between support and reassurance for the child.
Of course, modern treatment allows parents to feel truly confident about their thalassemic child’s future. This is enormously important. Because so much depends on the parents own confidence and ability to cope. If the parents are calm and confident then the child is confident but if they are afraid, the child will be anxious most of the time. To help children feel secure, it is important to answer all their questions truthfully, and to open about the disease with them. If they think something is being hidden, they naturally get anxious.
Many parents find it very helpful to belong to a Thalassemia Association, where they can meet people with the same experiences as themselves, and also work for some actual improvement in the life of families with thalassemic members.
Thalassemics usually start coming to the hospital alone and taking over their own pump, negotiating their own treatment with the doctor at about 12 or 13 years of age. This is delicate time of life even for people who have not got thalassemia. The physical changes of puberty usually takes place in the next four or five years, and adolescents have to start separating themselves from their parents in order to take control of their own life. They usually also start to have a social life of their own, perhaps including their own girlfriends or boyfriends.
It is important for thalassemics to take part in all these changes as normally as possible, in order really to beat the disease and lead a normal life. You may feel it is difficult to develop your independence because of your parents are anxious about letting you go out and behave as other people do. However, in the end most thalassemics seem to strike the balance where they have the freedom to do what they want, and at the same time are tolerant and understanding of their parent’s anxieties.
But the need to feel as normal as other young people sometimes makes it difficult to go on accepting the pump. Your parents no longer organize it for you, and you often find it too much of a nuisance to do it for yourself, especially if it interferes with your social life. The biggest problem for thalassemics during adolescent and young adult life is to continue taking the pump regularly. Believing in a normal future for yourself and working towards it, is the most important step towards keeping yourself healthy.
Usually these days thalassemic patients who have been on the pump have a normal puberty, and this is very helpful. But some people still have problems with puberty and find they are getting left behind while their friends grow up, and this can be quiet demoralizing. There is an even stronger temptation to fight the disease by pretending that it does not exist, and to reject the pump, and of course this makes matters worse. This is why we recommend you to check with an endocrinologist that you are growing and developing normally, starting at about 14 years of age. If there is any problem, starting treatment early is important to keep your morale up, so that you go on taking care of yourself.
Fear Of Death
Older patients often find themselves torn between despair of the “old thalassemia”, which was a fatal disease, and hope of the “new thalassemia”, a disease that can be controlled, with a normal future, but requires a continual struggle. So it is only natural for a thalassemic’s mood to swing rather suddenly. One day you may feel confidence in the future (which gives you the strength to lead a normal life): the next day you may feel anxious and hopeless (which undermines your determination to go on fighting the disease).
In the end, some thalsssemics who do not manage to take the pump regularly die from iron overload. This is a tremendous blow to their thalassemic friends, who lost a companion and some of their own confidence as well. However, in practically every case, this has happened because that person could not manage to take their Desferal properly. It is important to remember this, if one of your friends dies.
We also have to recognize that it is quite impossible to persuade few people to take their Desferal properly. Sometimes it is possible to help them to get a lot of iron out by special arrangements, such as intravenous infusions of a large amount of Desferal at transfusions, or implanting a Portacath, but in a few cases nothing makes any difference.
Part of coping with the idea that the disease might be fatal is to turn one’s mind away from long-term future plans and concentrate on making the most of the moment. Many thalassemic patients live life absolutely to the full and put a great deal into friendships, so that many people get very attached to young thalassemic adults.
However it is also important to make plans for the future.
This includes getting the best education you can so that you will be able to earn your own living, and thinking about marrying, and hopefully having children. When you do get a boyfriend or girlfriend and start thinking of marriage, it can become easier to keep taking the pump. This is because now you have a responsibility to keep healthy. The fact that you have chosen this responsibility gives you strength to keep up the treatment.
Crises can make problems seem much worse. For instance, if you happen to develop diabetes, it is hard no to become demoralized. But oddly enough, some thalassemics with diabetes manage to get into the habit of taking Desferal regularly for the first time, perhaps, because now they really can see that iron overload is harmful, and the diabetes forces them to have daily treatment of some kind anyway!
Sometimes thalassemics find it hard to have normal self-esteem, even though they are as good and valuable as anybody else. It is important to have proper ambitions for your future, to feel that you can compete as an equal with non-thalassemic people, and to feel confident enough to find a life-partner. For many young thalassemics it can be helpful to be close to other people with similar problems, who understand the disease, and also the complexities in your relationship with your parents. Thalassemia Associations that bring thalassemic adolescents and young adult together can be helpful in this way. Here friendships are made, and people strengthen each other (for instance over taking the pump), and accompany each other into the adult world.
Some families and some people do not want to join a Thalassemia Association, for various reasons. They may just not enjoy associations, they may be so healthy that they don’t feel the need to meet other thalassemics, or they may not want people to know that there is Thalassemia in the family. People themselves are the best judge of whether or not to join an association.
Thalassemics can feel guilty too, because their disease causes so much trouble to their family. It is true that your Thalassemia puts pressures on the people around you, but it puts most pressure on you, and it is not you fault that you have it. It is just one of the many problems that arise in life that we have to face together. Thalassemia Associations are important because they show that Thalassemia is not just a problem for you or your family, it involves us all. We all gain by sharing in the struggle against it, and we shall all benefit when the disease is finally beaten. You play an important part by accepting the help that people try to offer you, and by developing yourself into a normal person. Some thalassemics also help by speaking out about the services they need, by taking part in research, and in many other ways.
That is why we are asking for your help. If any parts if this book are not clear, or put things in an upsetting way, please write and let us know, so that we can improve the book.
There are probably a lot of points that we have not mentioned, particularly in this chapter on psychological problems. We would be glad to know more of your views and experiences, to include in the next version of the book.