LHM Youth Lifestyle information – Family

Most of you will live with at least one parent/guardian that has travelled your journey with you. Maybe siblings that have supported you along the way too. This can bring such a strong support system that can help but this also needs to change and grow as you do.
How to talk to my family about life with my heart?
Your immediate family (family that you live with) are often the people that you feel most comfortable talking to about any challenges and your heart condition whilst growing up.
We know that as you get older the most challenging things to talk about can be topics such as boundaries, taking the lead now that you are older, sex and relationships and career and further education choices. Sometimes it can feel awkward bringing these things up


so what way is best?
If you want to talk to your family about something you find difficult, its best to do it in a calm, mature way. That way they will understand that you will come to them if you feel overwhelmed. When you feel overwhelmed or anxious reactions might come across as angry or rude, you might even find yourself becoming quiet about things but talking to people you trust can really help.
Statements like:
‘I’m feeling anxious about my next hospital appointment’
or
‘I don’t feel like school understands me properly and its making learning harder’
Will be much more effective in getting your point across or getting the support you need to feel better in that moment than not talking about it at all or losing your temper because your stressed and getting into trouble.
If you are not yet ready to start talking, there are other ways to communicate. Have you thought about writing a letter or having a question box so you can learn about your heart in hospital appointments?


Open communication isn’t just talking its communicating in the best way for you. Your parents/guardians have looked after you for so long and kept you as healthy as they can. Its possible that this may be hard for them too at first but that is normal. Understand and respect that it may take some time but that is because they love you.
Other family members (aunties, uncles, cousins and grandparents) only have the right to know as much as you feel comfortable sharing. As you become a young adult you become in control of how much you want others to know. Just remember these people can become great sources of support too!
Does my brother or sister understand?
or
‘I don’t feel like school understands me properly and its making learning harder’
Brothers and sisters are often our first friends, our first enemies, the people we trust and our biggest supporters. Growing up together in the same house brings us closer together, regardless of the arguments usually our siblings are our biggest fans, our protectors and love us unconditionally.
Young people with a single ventricle heart can sometimes feel a bit jealous that a sibling has a healthy heart and that’s normal, as long as we don’t blame them for it. It’s not their fault.

A lot of youth members come to us at LHM and ask if their siblings really understand. They might, they might not. They will only be able to understand what they see and what they are told. If you hide everything from them that’s your choice but it will affect how much they understand. If you tell them everything that’s ok too but they might be a little scared or really protective because they love you.
Some siblings have even come to LHM a little jealous ….. you might be thinking,

‘jealous of my heart when theirs is healthy? You have to be kidding!’
If siblings see the attention that having half a heart can get from their parents, see you having time off school without understanding that this isn’t a fun time for you they could become jealous.
The best way to move forward is again sharing whatever you feel comfortable with but remembering that they kind of have a journey like you do. They worry, they get jealous, and they feel protective …. because they love you.