Wednesday 22 May 2013

11 tips for talking to children about your illness.

To talk to your kids about your illness, or to not talk to your kids about your illness? This is the question that faces every parent living with chronic illness. Do you tell them? If you do, what do you tell them? Is it better to shield them? Is it better to ply them with chocolate and give them a new Xbox game and pretend this question never came up? Or alternately, ply yourself with chocolate and hide in your bedroom watching repeats of The Walking Dead on your laptop, and pretending that the question never came up?

The reality is that for the most part your kids, no matter how old, already know something isn't right. And in all likelihood they will be creating all sorts of scary scenarios in their head. Kids will fill in the blanks if you don't. And often the filler they create is negative. It's one of those times a kids imagination and creativity can be quite unhelpful. Just because you aren't discussing your illness, doesn't mean they aren't still thinking and worrying about what is going on.

My kids were young when I first became ill. My youngest was 8 and my eldest 11. It was a hard and scary time. I had no idea what was wrong initially. Dealing with the stress of the unknown and my own over-active imagination was consuming most of my waking moments. I thought I was doing a good job of protecting them from my worries and my failing health. What I didn't realise is that kids are always watching and are way more in tune to what is happening around them, than we ever give them credit. Saying "mum's just a bit unwell", and generally minimising things, really wasn't working. But in my own distress, I was simply oblivious to that fact.

Problem was, that whilst I was doing this, my kids had convinced themselves I was dying. Worst of all they didn't want to share their fears with me for fear of stressing me out. Instead, they were quietly worrying themselves sick that I would soon be dead.

When they finally told me, it ripped my heart out. Here was I, thinking that I had protected them from what was going on. But instead they had born a huge burden alone for a long time. If I have ever truly felt like the world's worst mum, it was in that instant. From that moment on I decided to talk openly with my kids about my health. Well okay, that moment may have been preceded by much in the way of tears and gut-wrenching guilt, but once that passed I decided that I wouldn't hide things from my kids again.

Now admittedly, there are aspect of this illness that you can't hide. Passing out for example is pretty hard to cover up. But there is a huge difference between your children being witness to the event and actually discussing what happens and why. If not dealt with, the uncertainty and the unknown feed fear. When it comes down to it, it really is true that knowledge is power.

So what are my main tips?

1.  Be prepared: Working out how to explain your illness and what it means, before the discussion occurs will help greatly. For a complex disorder like Dysautonomia it can be hard to explain at the best of times. If stumped, ask fellow patients how they explain their disorder. There is bound to be an explanation you can use for your situation.

2.  Tailor the information to the age and maturity of your child: The information a child needs, and can process, at 8 is very different to 15 (as my youngest is now). But whatever their age, or level of maturity, there are ways to talk to them. Early on we basically told my kids that I had a heart problem, but the doctors were trying to work out how to make me better. Over the years this has evolved as they have matured. Now at 15 and 18, they want more detail. They know about the autonomic system and the problems I face. They know about my meds and the types of doctors I see and why. We are now open about the whole situation. But it is a process. It is easy to discuss these things now as we have been discussing them in some form or another for 7 years. Each conversation building on the previous ones.

3.  Answer the questions they ask: don't overwhelm them with details unless they ask for them. Take it step by step. Some kids only want simple answers. Others are a sucker for detail. You don't need to overwhelm them with bucket loads of technical information, unless they ask. It can be a weird mindset as a parent, but you have to step back and let them lead the conversation.

4.  Be honest: My two asked me to promise to tell them if something serious was happening. My first reaction as a mum was to protect them. But in agreeing, I gave them a sense of reassurance. They no longer had to lay awake at night worrying if I was hiding bad news from them. If we weren't discussing it, it clearly wasn't an issue.

5.  Conversations can happen anywhere: if there are big issues to discuss, a specific family meeting can be great. But I've have found that most conversations begin when you least expect them. Questions are asked whilst you're making tea, whilst driving, at the checkout, waiting for a movie to start, late at night (mine are big on this, and many discussions have happened at 11pm or later). The important thing is to take the opportunity you are given whenever it happens, and go with it. The timing may be weird or inconvenient, but it is the time your child is finally comfortable and ready to discuss difficult issues. You simply have to go with the flow.

6.  Empower them with solutions: teach your kids what to do if something happens eg what to do if you pass out. This can be a scary time, but if kids know what to do it can alleviate much of the stress for them. Teach them them how to dial 000, 911,999 or whatever the emergency number in your country. Give them a contact person they can trust to ring in an emergency or if they are scared. Simply knowing to bring you water, or a salty snack when you are starting to fade gives them a sense of control.

7.  Include them in the process: Sit down and work out a plan with them. Eg if mum is on the floor and she wont wake up ring 000. If mum wakes up, bring her water, salty snacks, a blanket, keep the dogs off her (a necessity in our house).

8.  Empower them with knowledge: When an illness is chronic there are symptoms which are simply part of your day-to-day. My kids are pretty attuned to what is normal for me now. They know the cues for when I need to sit or lie down and it is all handled with minimal fuss. If I'm cooking tea and getting pale or starting to sway, they grab me a chair and a drink straight away. It's normal. It also means that they can detect when something more serious is going on (eg when I collapsed  last week). When every day is punctuated with symptoms that can be scary and confronting (something I really notice when we have visitors who aren't used to my health issues) knowing what is white noise and what is time for action relieves a lot of tension.

9.  Lead by example: learning how to deal with your own stress and choosing how to live your life, part of which is illness, is vital. Kids learn by example, and as parents we are still the main influence on their lives. If we are consumed by illness and not managing our stress they will also be consumed by our illness and stressed. As mother's we are often taught to put ourselves last. But the reality is that in taking care of ourselves, we are in turn taking care of them. If our kids see us managing in healthy ways they will learn these skills simply by being with us.

10.  Utilise support services for kids: If you are worried that your child isn't telling you what they are feeling or you don't feel confident to discuss these issues there are services available. In Australia, Kids Helpline 1800 55 1800, is a fantastic free telephone and web counselling service for children. Similar services exist in most Western countries. You can provide your children with information about these services and let them ring at need. Family counselling can also be valuable if you want some professional direction and support as to how to discuss these issues. Letting your child's school know about the situation can also be useful. For example, they can provide counselling if needed, or simply alert you to changes in your child's behaviour. We met with our children's teachers and let them know what was going on. Whilst no major issues arose, the teachers appreciated being told and it definitely gave me some peace of mind.

11.  Kids are resilient: This is the final, and in many ways, the most important point. We often underestimate how resilient our kids are. But the one thing I have learnt over the last 7 years is that kids can show an incredible amount of strength and empathy. They surprise me everyday. If they feel loved and supported it is possible to make it through. We can't always protect them from the stressors of life, but we can provide them with the tools to manage them as best as possible.

We have had many ups and downs over the last few years. I wont say that at times it hasn't been stressful or tough. They still worry. I still make mistakes. And things go pear-shaped at times. But overall we are maintaining a reasonable balance in difficult circumstances. Being open with our children has been confronting and hard at times. But that's not unlike many of the issues we have to discuss with our kids as parents. But we can do it. And our children will be the better for it.

Michelle :)

Okay I couldn't think of a song about talking I liked, but I do like Talking Heads and my kids love this song and it's parody Psycho Chicken.


  1. Excellent. Very excellent. Yes kids are always watching and always know more then we think they do. My son is older but he still is worried about me dying on him. It is hard for them.

  2. Great post! My kiddos are 23 months and 4.5 years, the 4 year old is running into lots of fears regarding fear of losing his mommy. I am coming off such a severe flare up and he gets scared I will get sick again... I have been trying to figure out how to put this in age appropriate terms. I promised my babies, long before they could even understand, that I would always be honest and never hide anything from them. Now that my son is old enough to want some answers....well, it is much more difficult to know what to say than I thought it would be.

  3. I love this post. I have two children (ages 7 and 9). Learning to talk with them has been a serious learning curve. Each requires a different approach. The most difficult times, so far, have been early on when we didn't know what was going on. We were honest and told them we were working with the doctors to find out what isn't working right. My youngest decided that it was all part of my epilepsy. Some of the doctors came to the same conclusion so we just let her go with it. Her big sister always wanted more information. I erred in giving her what she wanted and she ended up stressing out. We now have them help bring snacks and drinks and leave the rest to the grown-ups. We do have emergency contact for them to call for help if they need to. They took it in stride this week when I had to go to the ER. I told them I was having a bad day and the doctor wanted me to go to the hospital. They went with a friend of mine and had fun playing at her house for a few hours while I got extra fluids. It was just like another appointment for them.

    We all have come a long way and I am so grateful that I can read these blogs and help myself through this new life. Thank You!


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