Immune Thrombocytopenic Purpura Patient & Family Handbook

ARE MY FEELINGS NORMAL? Hearing that your child has a disease can be overwhelming. It is important to know that this is normal and expected. Most families have difficulty processing all the information the healthcare team is providing in the beginning. However, over time, the information will be repeated and can be absorbed. Many families feel somehow responsible for their child’s disease. Feelings of guilt also are common over not being able to protect their child from illness or because of the amount of time it took to diagnose the child. This disease is not caused by anything that you did or did not do. Feelings of sadness, anger, and helplessness about your child’s diagnosis also are common. These feelings are normal. Each member of the family may express these emotions in different ways and at different times. Talking honestly with one other about these feelings, emotions, and reactions will help everyone in the family. Keep in mind that there is no right or wrong way to feel. Each member of the family needs the chance to express their feelings in their own way when they are ready. Talking to friends, family, and members of the healthcare team can be difficult at times—however, sharing your feelings can help you cope. Your child will benefit from family and friends showing their care through communi - cation and support. HOW CAN I HELP MY CHILD? Children often think that something they did caused their disease. You can help your child by reinforcing that this is not the case. Make sure your child understands that your feelings of anger and sadness are directed at the disease, not at them. This will help you keep a close relationship with your child. Your child will need to share their feelings with someone that they trust, and they may choose someone other than a parent to avoid upset - ting the parent, which is OK. Don’t be afraid to ask your child about their feelings—it may be what your child is waiting for. Keep in mind that your child is still a child in spite of the disease. Children going through treatment still have all the needs of a growing child. All children need love, attention, the opportunity to learn and try new skills, and limits. Do not avoid talking to your child about therapy. Use explanations that your child will understand. Children tolerate treatment better if they understand it and are allowed to help make decisions about their care, when appropriate. The things children can imagine on their own are often more frightening than what is actually happening. As a parent, you may find it difficult to watch your child go through treatment. Your child may sometimes seem sicker during treatment than before treatment. Your feelings about what your child is going through must be bal - anced with the knowledge that treatment provides the chance of curing the disease and making it possible for your child to live a full and meaningful life. It’s difficult to accept how treatment may change your child, but most of these changes are temporary. Despite outward changes, your child is still the same person on the inside. Many healthcare centers have a psychosocial team that can support you and your child through this illness.

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