This is an important question, how to talk to your children about chronic illness. Telling your children you have a chronic illness is not an easy thing. Knowing when or what to say is going to be unique to your family.
Your kids may notice your symptoms or your coping mechanisms and ask questions.
How to approach the conversation:
- Be matter of fact
I told my children what my conditions were. The key symptoms and the things I do to help myself (to keep it positive).
2. Be guided by age and interest
Some children will be deeply curious and others may not need to know much. They’ll likely learn more by seeing you in your daily life than by talking about it.
3. Be open to ongoing conversation and questions
We’ve had multiple phases of questions. When new things come up, my oldest needs a little more explanation and needs to understand what’s happening.
It’s a good thing for us to be mindful that our health can cause anxiety for our children. They may not understand what they are experiencing so it may be helpful to try and figure out if they need more information or less.
Early in 2023 I had a period so severe that an ambulance was called. My older two children were at their grandparents, but they must have heard them talking about me. This resulted in my eldest becoming a bit anxious about me and my health. We didn’t realise his refusal to go to school was partly due to him not wanting to leave me.
As we approached my operation, I explained what would happen (how long I’d be in hospital, when I’d be home, how long recovery would be, what they would do to me). I kept it matter of fact and upbeat.
4. Remember you’re creating the next generation of (hopefully) advocates
By creating understanding for yourself, you will be creating understanding for others they encounter in their lives. As tempting as it is to play your symptoms down to avoid upsetting your children, they can see anyway and you give them a chance to become inclusive champions.
Guidance for talking to your child about fibromyalgia
When the author copy of my book My Mama Has Fibromyalgia arrived it was amazing to get to share my experience with the children. It explains Fibromyalgia in an easy to understand way without completely dumbing it down. This triggered more conversations.
Fibromyalgia and chronic fatigue syndrome are such complex conditions it can be hard to know what to share/say, so I made it easy for those who want it.
I’d like to say it brought more understanding to my house on a daily basis, but it is not so. However my eldest said to me one day that he thinks I’m brave to manage the children, work, the house and have fibromyalgia. That was a special moment.
In short what i share is
- What fibromyalgia is
- Theres no cure
- What our family can do to help
- Mama always loves them
How did you approach the conversation with your kids?