Keep communication lines open, says Dr Sara O'Curry, clinical psychologist, Great Ormond Street Hospital
Adolescence is all about identity. Typically the process of developing identity involves experimenting with different looks, trends, attitudes and behaviours, gradually refining them until the one that fits best emerges.
It’s a process that takes a person from dependent child to independent adult. Like most processes things don’t happen in a smooth way but in a kind of two steps forward, one step back kind of way. This can be confusing (and frustrating) for those living with young people.
Your task as parent or carer is to help your child negotiate this worrying path and to act as the scaffolding that allows them to build their identity. You’re there to catch them if they fall and give them some guidance on which way to build but you can’t make them.
Having cardiomyopathy can be particularly challenging for both the young person and parent when negotiating this path through adolescence. The young person might feel acutely aware of and embarrassed about being different from his or her peers or angry that this part of their identity is forced upon them.
They might become fully aware of the larger implications of cardiomyopathy and suddenly become fearful. They might cope by pretending to themselves and others that they are ‘normal’ and thus engage in behaviours which are particularly risky for someone with cardiomyopathy.
Conversely, they might be afraid of separating from their parents and not develop the appropriate independence (they might even flit from one extreme to another)
For parents adolescence is a tricky time as they have to help their child move to independence, including encouraging their child to take more responsibility for their cardiomyopathy, but might be fearful of letting their child go.
The important thing is to have clear boundaries (the scaffolding again) and to communicate with your child.
This means trying to be available, approachable and having no taboo subjects so they can approach you about things that worry them and you can express your concerns or opinions clearly and be flexible enough to adapt your own behaviour in light of what your child says or does (this is the listening part of communication).
If at a particular time you’re too fearful, hurt or angry to do this, then tell your child how you feel and suggest that you continue the conversation when your feelings have calmed.
It is important for you to model how to handle strong feelings and to ensure that the lines of communication stay open.
Take a break and talk to family or friends or whatever support systems you have and clarify your own thoughts and feelings and what it is you need to communicate to your child.
Approach your child again when you’ve had a chance to think it through and can be clear about the behaviour you expect and the potential consequences of the problem behaviour.
By not getting angry or upset yourself you will be communicating that there are no taboo subjects, no matter how difficult, and therefore keep the channels open. If you remain flexible and listen, you will be able to move both of you on.
Sometimes adolescents can be very withdrawn and uncommunicative. They can appear very self absorbed and it is hard to know if they are struggling with something or just being a normal adolescent.
Again the important thing is to let them know that they can talk to you about anything that’s worrying them.
You can also acknowledge that it can be hard to talk to people who are close or involved and suggest that they talk to their GP, clinical nurse specialist involved in their care or a school counsellor, whoever is most approachable.
If your child doesn’t want to speak to anyone and you still have concerns then you could contact your GP or their clinical nurse specialist and discuss it with them.
Dedicated to Damian McLoughlin, who died age 20 of cardiomyopathy. This site is supported by Damian's family and friends.
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