5 Ways I Help My Children to Understand My Multiple Sclerosis

My children have only ever known me as their Mum with Multiple Sclerosis (MS). I was diagnosed 14 years before my first child was born and, although I was physically very well for the first few years of my children’s lives, they claim they can’t remember me not having MS symptoms. I have always been the limping Mum who uses crutches and a scooter, the exhausted Mum who benefits from a daily sleep and the Mum who has to adapt her daily activities to accommodate her chronic illness.

MS is a huge part of our life as a family and, perhaps because of this, I see it as my role to support and educate my children in understanding what MS is. I also hope to reassure them through my actions that, although the disease can be awful to live with, we can learn so much from it as well.

These are five ways I use to help my children understand MS.

1. I use simple analogies to explain what MS is.

When the kids asked what MS was, I was initially unsure how to explain it without using lots of medical terminology. But then I thought of a simple radio scenario — the cord that is plugged into the wall is covered with a plastic casing (the myelin) which protects the wire (the nerves). If the plastic casing becomes damaged, it may stop the radio (body) from getting the right signals from the wires, so the radio may not work as well. My phone cable recently broke due to the casing breaking and my daughter pointed out that it looked like it had MS!

The National Multiple Sclerosis Society has some fabulous resources for children in the form of newsletters you can print out and give to your kids to read.

2. I try to be a good role-model.

Do my kids see me when I am at my worst symptom-wise? Absolutely. Only the other day I was having a bad flare as I had a nasty cold and temperature and it meant I could not walk at all, there was no way my children couldn’t see how it was affecting me. However, day-to-day, when my symptoms are more mild, I try my best to show my children that people with MS can still exercise and take care of themselves, to help them them manage their illness.

One of the things I worried about when I stopped being able to exercise in the same way I used to — running and aerobics — was the fact that the kids wouldn’t have me as a role model for healthy living. But, actually, they do — I try to do adapted yoga and lift weights, albeit holding onto a chair and with frequent rests. I try to eat as healthily as possible and tell them it is because I want to look after my body. The children know I meditate because it helps me to have time out to myself, feeling calm. I hope all of these and other “self-care” acts (a fancy way of saying I listen to and respond to my body’s needs) will be showing my children how it is important to for us all to take care of our own bodies, regardless of whether we are living with a chronic illness or not.

 

3. I show my children how to help others and praise them for it.

Now that my kids are a bit older and heading towards the “tween years,” I encourage them to help out around the house, emphasizing that if we all pitch in, we would have more time (and me more energy) for playing together. It’s not always been easy, but they now understand that if shoes are left in random places, I am liable to trip on them.

We have put a “smiley face” system into place, where the kids are given smiley faces for anything helpful they have done, which then convert to pocket money or a treat of their choice. I can’t say that the kids show great teamwork when it is just the two of them playing, but as a family, we all try our best to work together to help each other out and this helps me massively.

4. I make them aware of disability and the problems disabled people may face.

If the kids are in the car with me and we haven’t been able to park in a designated disabled space due to someone else being there without a badge, I will explain why that is wrong. They have seen me being unable to enter shops due to lack of disabled access and have been there when someone made a rude comment about me being too young to have to use a scooter so I must be “faking it.” If I suddenly have to cancel plans because of my fatigue levels, I will explain to the kids that, although I look the same as usual, I don’t always feel the same. I hope by discussing these situations with my children I am raising their awareness of disability, including invisible illnesses.

5. I show them life goes on.

Being diagnosed with an illness such as MS can result in massive lifestyle changes. For example, I now struggle with working for three full days and may need to consider an alternative. Sometimes, it is all too easy to focus on what life used to be like or how our future may not be the one we planned. I try my best to continue to make plans, to show my children that even though life may change, it isn’t going to change me as a person. I still love going for “walks” with them, I just need to use my scooter. I still love to travel, I just need to be a bit more organized when doing so. And I still love exciting challenges — like going on the world’s fastest zip wire — I just need to ensure they can accommodate people with disabilities (I have checked and they can).

Us parents tend to doubt ourselves, but I hope by being open and honest with my kids about my illness, whilst also having a”glass half full” approach, I am helping to reduce any worries they may have in relation to my health.

A version of this post appeared on Tripping Through Treacle.

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