Talking to children about MS
Carole Bennett
Open Door - May 2009 page 6-7
I'm 50, and I have a 13 year old son. I also have relapsing remitting MS. My son was 6 when I was diagnosed, but I've had symptoms from when he was born.
He's about the same age that I was when my own mum began to have symptoms that were later diagnosed as MS. She had what I now know to be primary progressive MS.
In those days, people didn't talk about illnesses and feelings, it was stiff upper lip and nothing discussed with me, my twin sister and our older sister. We were told that our mum had multiple sclerosis. That was all. A little while later two very posh and unapproachable women (I think they were social workers, though that was the only time we ever saw them) came and asked us if we wanted to talk to them. We said "No" as we didn't know what to talk about, who they were or anything! This was in the early 1970's, so things were (hopefully) very different to how they are now.
Mum's condition deteriorated very quickly. Still no one talked to us about MS, and there wasn't the internet then to find things out for yourself. We told our friends, but our parents didn't tell school. I remember getting stung by a wasp in a science lesson and crying. Apparently school rang home, and my dad told them about our mum - but even then no teachers at school talked to me about it.
We weren't allowed to talk about it. It was as if everything had to be secret. I had to hold all of my feelings in. I cried so much in private, I was so scared of what was happening. I'm crying as I'm writing this, remembering the loneliness and terror that I felt. I became very withdrawn, didn't go out except for babysitting, and was a very 'good' teenager. I felt that I had to be good, to make things easier at home. My sisters both rebelled for a few years.
I was determined that my son wouldn't suffer like that. I have approached things completely differently to how my parents did, and my son seems to be very at ease and relaxed about my MS. It isn't a big deal to him, he says.
I have always been open and honest with him, answering his questions and talking about things. He knows about MS, what it means, why I have days when I'm grumpy, or when I'm so tired that I can't do anything apart from lie on the settee. Now I use a stick to walk and he's accepted that easily.
I made sure that I planned things for him so that he has had a good social life, even though I haven't always been able to join in. Unfortunately I'm a single parent (his dad left when we found I was pregnant) so that has been difficult at times, but my son and I are pretty close. He can talk to me about things if he needs to and there are others that he can talk to as well. School and friends know about it. I probably tell too many people! He's a typical 13 year old boy now, and generally doesn't want to share things like that with me, but I know that he would if he needed to.
Other things that have helped us have been books such as "My Mum's got MS" and "My Dad's got MS," friends, school teachers (really important to let them know), and the local Young Carers Group. We have no family to help, as my parents and my twin sister died before my son was born and my elder sister has asked me never to talk to her about having MS. I have found it very difficult at times being completely on my own with my son, especially when he was younger and when things like the fatigue were really bad. But friends have been great, both practically and emotionally, although I do find it hard asking for help.
MS is difficult to cope with and I have had a lot of issues which I know are largely due my mother's MS. I've had counselling with a neuropsychologist with expertise in MS, and she has been brilliant. She has helped me resolve so many things that I'd had to cope with from when I was growing up and we didn't talk.
I feel proud of the way that I've brought my son up concerning the MS, even though I'd far rather not have it at all. He doesn't see it as a big thing, which is fantastic. From my own experiences, both as a child whose mother had MS and as a mother who has MS myself, I think that the most important thing is to try to talk and be as open and honest as possible with your child.
- Read about the MS Trust's new book - Kids' guide to MS
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