Supporting Children When a Parent is Chronically Ill

My children might not need me as much physically anymore – they can get themselves dressed, make their own breakfast and even, in the case of my oldest child, take himself to school.  However, from an emotional point of view, they most definitely do – arguments with school friends and worrying about swimming competitions are the biggies at the moment.  And there is one more: my Multiple Sclerosis.

As my kids get older (they are now 10 and almost 8), I have noticed a shift in their attitude to my MS; they no longer appear unaware of it, or oblivious to my symptoms.  I guess the reason for this could be a mixture of their increasing age and maturity levels and also the fact that my Secondary Progressive MS is slowly worsening.  In the past, I was able to ‘fool’ them by only having a nap whilst they were at school, or they would see me bouncing on a mini trampoline for my exercise (so, in their eyes, my MS can’t be that bad, can it?)  But now I need to nap at the weekend and the mini tramp is in our garden for the kids’ sole use.  Sure, they’ve always known that I have MS – they know that I use crutches and that I don’t eat certain foods because of it, for example – but, apart from the time when my son mentioned about me having to use a scooter – they never really seemed that bothered by it.

Over the past 6 months I’ve had more help with my yoga from my daughter, helping to keep me steady, and increased instances of my son asking, ‘are you OK?’ when I have stumbled or fallen in front of him.  But I think the thing that made me most aware of the impact of my MS on them was the reaction that my daughter had when watching a video recorded about 6 1/2 years ago.  It showed me giving the kids their lunch, playing with them on swings and running on soft play equipment.  Seeing my daughter start crying, after she asked me a shocked voice, ‘is that you, Mummy?’ absolutely broke my heart.  Since that day, a couple of weeks ago, she has been even more clingy with me and talks more about my MS, often saying, ‘I love everything about you, apart from your MS’.

Chronic illness affects the whole family, not just the person who has the medical difficulty.  And just like adults often differ in how they react and deal with a loved one’s diagnosis and symptoms, so may children.  For sick parents, the effect their illness is having on their children is often the most heartbreaking part of it all.

Parenting itself is hard and, when you have a chronic illness likes MS, it can be difficult finding the right way to support your kids with their feelings about your illness and the effect it may be having on them.   I hope that you find these practical tips useful; I know that I appreciate having some concrete ideas on how best to help my kids deal with my MS.

Be Aware That Children May Differ in Their Response

As mentioned above, children are not necessarily predictable in how they react to a loved one’s illness; I know that in my experience, my son is much more closed off and quiet compared to my daughter.  He doesn’t talk about my MS a lot and can sometimes even appear not to care.  I know that this isn’t the truth though – occasionally he will randomly give me a big hug and say that he wishes I didn’t have MS.  My daughter, on the other hand, is much more emotional; she flies off the handle more easily, talks about my illness a lot and can be clingy.  Neither response is wrong; both children will need just as much support and understanding.  Providing practical strategies and ideas on how to help them deal with their emotions can be beneficial; my kids see me meditate, and I explain that it helps me to feel calm.  My daughter now sometimes does Cosmic Kids Yoga and my son has dome some of the kids’ meditations on Headspace.

Don’t Be Afraid To Talk About Your Feelings…

…But do your best to avoid negativity.  It is important for our children to see us acknowledging when things are hard for us, they need to know that it is ok to cry and to not always feel brave.  But constantly being negative can be draining on everyone. Instead, let them know that even though you are sad at not being able to make it to every out of school activity or competition, you will still be there in spirit, cheering them on.  And that you are always there to listen to them if they ever feel ready to talk.  Some children would prefer not to talk to an ill parent about how they feel; in this case, encouraging them to talk to another trusted adult can be useful.  Young carers clubs can help, as can creative outlets, such as writing, drawing and painting.

Explain Your Illness in an Age Appropriate Way

MS is a tricky thing to explain, especially because much of it is an invisible illness.  However, children often fear what they do not understand; finding a way to explain about your illness and reassuring them that your illness is not their fault is so important.  This blog post explains I how talk about MS with my kids, to help them understand.

Keep an Eye Out for Bullying

Children can be bullied for all manner of (completely senseless) reasons; having a parent who is ‘different‘ can be one of those reasons, unfortunately.  Involve your child’s school if need be and provide your children with ideas on how to answer people’s questions, so that they don’t feel put on the spot when approached by other kids.  Again, encourage your child to speak to other trusted adults.

Keep Up With Your Routines

Most kids thrive on routine.  At a time when life can be unpredictable, due to chronic illness, kids feel safe when their routines are regular and consistent.  It is asking for help again – if you are having a hard day or have appointments to go to, ask for someone known to the child to step in and support you and the children.

Let Them Be Kids

Prioritise the time when they can just be themselves, children work through stress and emotions by playing.  If you need help, don’t hesitate to ask friends or family members – perhaps they can have the kids for an hour whilst you rest or take the them to the park to run off some steam.  I have to admit that it took me a while to feel comfortable doing this; I felt like I was less of a parent if I couldn’t always accompany them.  But I know that asking others to help benefits my kids and that is the most important thing.  I also make sure that I spend quality time with them myself, doing things that they love – going to the movies, reading and pottery painting are all things that we can do together.

Take Care of Yourself

Being a good caregiver means that you are able to model the importance of taking care of yourself and your body’s needs, helping it to rest and recharge.  I know that I feel better when I take a little bit of time out every day to do something for me  – I read a book (and tell the kids that I would like to have a quiet 20 minutes to do so), or paint my nails, for example.

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Parenting with a chronic illness can be hard, and it can be difficult to know how best to support our children to help them live with the illness and the limitations it may place on their lives.  We’re not always going to be perfect, and there will definitely be bumps along the way, but I hope that these tips help you to feel more confident in helping your child to accept your illness.  Please let me know if you have any top tips of your own!

Until next time,

Featured image photo by Caleb Woods on Unsplash