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Coping with your family's psychological health


Being the parent of a child with a chronic condition is probably harder than being a parent generally, and that’s already pretty hard. Right now this might feel like a particularly stressful time and so it's really important to look after our psychological health and that of our children. Stewart Rust, Psychologist at Royal Manchester Children's Hospital, has put together some helpful advice to managing your stress levels and helping your children as part of our #WednesdayWebinarSeries.

01. What you’re feeling is normal

It’s normal to feel ok sometimes, it’s normal to feel worried sometimes and it’s normal to feel generally stressed and exhausted. Whatever you’re feeling, if you’re managing to get up every day, that’s probably OK!

02. What does stress feel like?

If you're stressed you might feel confused, disorientated, have difficulty remembering things, being organised, have problems problem-solving. You might get obsessed and preoccupied with certain events. Try to give yourself some time away from thinking about it and remember that amongst it all we have to find a way of living, and living as well as possible.

03. What can we do about the stress?

When people are stressed, they show it in their behaviour – overeating, undereating, drinking more, trouble sleeping, being snappy – all these things are normal but what can we do about it? The most important thing we can do right now is look after ourselves – be kind to yourself and caring to those around you. Be comforting, hugging and kissing your children and partner is important. Keep people close and enjoy being around them. Validate yourself, notice when you’re getting it right and when other people are as well. Are you feeling stressed? If you are, notice it and name it. What can you do in your day to day life to make yourself feel better and to focus your attention elsewhere?

"Be comforting, hugging and kissing your children is important."

04. Grounding

If you’re really struggling, try grounding exercises where you focus on where you are right now. What’s around you, what are you touching, what are you sensing, what are you feeling. Take time out each day and connect with what’s happening in your life. Be aware of your breathing. Dr Russ Harris has some exercises on YouTube you can follow and has produced a great resource called FACE COVID.

05. Talk to your children

Not all children and young people will understand illnesses the same way that grown-ups do so you will need to tailor these conversations to the age of your child. It’s important not to overburden or go into too much detail – not that you need to tell fibs but you might not need to tell them everything right now. Share with children the right information at the right time that’s at a level that they can understand.

06. Routines

Routines and clear boundaries make everyone feel safer. Children and young people will have had big changes to their routine right now so what you can do at home to make a lightly structured routine is a good idea. Don’t make it so rigid that you become a slave to it, go with the flow a little bit and understand what’s right for your child and your family.

"Routines and clear boundaries make everyone feel safer."

07. Fake it to make it

When parents are stressed children pick up on it. Children might be clingier than normal, might want more attention than normal and it might feel like they are making more demands of you than normal. You’re likely to feel more stressed as well. If you are, you have to be really careful how you show that to your children. Don’t pretend everything is ok, but don’t be upset or distressed visibly in front of your child either. If you suffer from anxiety there’s a concept called ‘fake it to make it’ where sometimes putting on a brave face and pretending you can do something is enough for young children to feel safe and more confident. Be aware that however you’re reacting will be witnessed by your children what you do and how you react is going to make them feel safe or not.

"Sometimes putting on a brave face and pretending you can do something is enough for young children to feel safe and more confident."

08. Choose your resources carefully

There are loads of resources for children and young people but be careful to choose safe and sensible ones. Like these short videos from Belfast Health and Social Trust and the resources Ellie Atkins at Guy’s and St Thomas’ Hospital has produced.

09. Keep calm and stay cool

Because your children are stressed their behaviour might be more difficult and you’re going to have to remember to keep calm and stay cool.

Pick your battles – are the things that used to be important really so important right now?

  • Check-in with yourself – how are you? Why are you reacting the way you’re reacting today? Is it the children’s fault or something you're feeling?

  • Don’t forget to play – have fun with your kids, play is so important and will help you remember what great people they are.

  • Clear boundaries – children might overstep the mark sometimes, clear boundaries, clear rules and routine will make children feel safer. Pick the rules that are important and stick to them.

  • Appropriate consequences – if your child is being really difficult ask yourself what is happening for them right now. Are they stressed and anxious or are they challenging and testing a boundary? Removing a toy or stopping them from doing something they enjoy is a great way to remind them what the expectations of them are.

  • Catch more flies with honey – try to catch children doing what you want and praise them. Great phrases include: “it makes me so happy when you do…” and “I am really proud of you when…”

  • Time outs – these are tricky to do properly and only work if your relationship with your child is strong in the first place. If time outs aren’t working for you go back to play and praise and build up your relationship.

10. Remember...

Stay being you! You’re probably doing better than you really think you are. If you’re juggling work, children and health that’s a lot to do, notice it and praise yourself. Take time to stay focussed, stay in the moment and stop your mind running away. People can cope with amazing things but there may be times when you are not doing so well. Your GP or mental health services are still here to help.

"You’re probably doing better than you really think you are."

With thanks to Stewart Rust for producing this video.

Find more support, information and resources to help you with social distancing and coronavirus if you are living with MPS, Fabry or a related disease visit our dedicated COVID-19 pages. Or you can follow our weekly Wednesday webinars series here.

If you have found this information helpful please consider donating to the MPS Society.

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