How do parents and carers cope? A discussion

Our specialist paediatric helpline nurse Emma Greenslade discusses how parents and carers cope with their child's diagnosis of cardiomyopathy.

Living with cardiomyopathy can be challenging, whatever age you are. People respond differently to a diagnosis, and feelings can change over time. There might be times when someone feels well, and is positive and able to manage their condition so that it has minimal impact on their life. At other times, they may feel very unwell, or feel upset and unable to cope. All these feelings are understandable, and can be part of living with a long-term condition.

Some people experience stress, depression and anxiety. While many people feel this way at some time and it can be a normal reaction to a diagnosis, when these feelings are persistent and start to get in the way of life, it may be helpful to look for sources of support. Support can take many forms. For some, having the opportunity to talk through how they are feeling can be really helpful, either with family, a friend, or a teacher or counsellor at school. More formal counselling (having appointments with a trained professional) might help, or medication might help to manage these feelings. You can talk to your child’s doctor about this.

Depending on their age, you might find that there are times when your child is happy to talk about their condition, and times when they seem worried or withdrawn. Some children may find it difficult to express themselves, and how they are feeling physically or emotionally. Sometimes this can show in their behaviour, and they may be withdrawn or irritable . And this can be hard on you too. Talking to your child about their feelings is often a good place to start.

This article is taken from an original discussion on our Facebook page (opens new window).
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© Cardiomyopathy UK. January 2018.