Most people will face the blues in life. Sometimes this is due to circumstances and disappointments, other times it may be due to sheer boredom or the cause may be unknown. Those having thalassemia may be more prone to these feelings for many reasons. Feeling disadvantaged, having to deal with needles and pain, feeling afraid for your future, hearing of other thals who did not do well, complications due to thalassemia, physiological problems due to iron overload (that actually cause depression) as Andy has mentioned in another post, depletion of certain essential vitamins and minerals in the disease and many other issues that can lead to negative feelings.
I have been hearing about this since my son was a baby and I have been trying to prepare him for these feelings that may occur as he grows. I know that all children face different feelings and sometimes may feel sad for no reason. I have taken these opportunities to make them aware of these feelings and not become overwhelmed by them.
On a few occasions, when little A was 6 years old, he told me that he felt sad for no apparent reason. Initially, I was startled and hoped that it would not persist. When he complained a few times, I decided to share a book with him portraying many faces, each showing expressions of different emotions. I told him "Of course you will feel sad sometimes. Sadness is an emotion and emotions make you human - as does feeling happy, sad, surprised etc." This explanation seemed to make sense to him and he actually like it. I also told him that it was okay to be sad and disappointed sometimes, but that it is very important that he moved past these feelings and to feel happy and excited most of the time.
Other steps I have taken to ensure his emotional well being has been to ensure that he is getting his vitamins and supplements. At the time I did not know nearly as much as I now do (thanks to Andy and this website). Deficiencies can have negative impact on emotions. I also began educating him more about thalassemia and how all people have different challenges (allergies, disabilities etc).
Little A soon became quite mature about his feelings and was able to determine if he was bored, disappointed or actually sad. I also advised him to allow a certain amount of time for himself to feel these emotions because it was necessary to feel them, but that he should make sure he was always in control of his feelings and actions. I think that this is a necessary skill especially for a person having thalassemia. I then gave him tools to help him feel better when he was ready to move past the sad feelings - like doing something he enjoyed or engaging in something so that he did not develop a habit of doing "nothing" and being sad. I also told him how he could talk to others and get help. Although his few moments of sadness were not severe and were relatively short, they gave me an opportunity to make him aware of his feelings.
When my daughter was 5 years old she came to me saying that she also was sad for no reason. Much to my surprise my son began telling her that it was okay and that it meant that she was human. He told her 'when I was 6 is used to feel sad sometimes too...." I couldn't believe how well he helped her understand. The next day while sitting in the back seat of my car my daughter began singing a song she made up "sometimes I'm sad, sometimes I'm mad, sometimes I am happy....because I am human and I like having feelings because it is better than not having any feelings at all - but I am in charge because they are my feelings..". I was blown away because she had learned this from her brother.
There are days when we need to review all of this with our children. During the difficult situation we faced this summer, we all required a lot of refreshing and relearning. I also realized that the numerous meds he was given as well as the time spent in the hospital depleted little A's energy. A nutritious diet, supplements and a lot of positive talk and actions helped greatly. As Andy can tell you, I shared pictures of little A with him from June and then December - along with the unbelievable physical change - the energy and excitement in his eyes is the biggest change.
I think that it is important to let thals talk about their concerns and feelings. It is important to acknowledge that they face a lot of difficult situations and that it is okay to feel bad about that sometimes - as long as they are feeling good most of the time. There must be more good than bad - A LOT more good than bad to live a healthy balanced life. Trying to live as normal of a life as possible is very important, because being sheltered emphasizes the negative and keeps thal with you in a negative way all of the time. Being engaged in life in whatever manner possible is important. Finding out what you are good at and doing it is very important. Helping others and making a difference in other peoples lives is very very important. It is also important to do things to engage in things that improve your own health because that reinforces how important you are and how important your health is.
Remember, along with acknowledging your challenges and the negative feelings they may bring - it is very very important to acknowledge the positives and all that you can do. Taking control is very important - take control of your feelings and your future and then your life will look more the way you want it to. There will always be things that you can't change - so change what you can and change it to the way you want it to be.
These are some of my ideas and what has worked for me - emotions are most of the battle in thalassemia. Emotionally healthy thals do better because essentially they are in charge of their own health. I look forward to hearing your ideas for myself and to help some of our adolescent and adult patients in dealing with their emotions.
Sharmin