Telling Your Children You Have Multiple Sclerosis

Vicki Health Guide June 07, 2010
  • Am I the only one?

    When I first learned I had MS, my thoughts went so many places it was almost like a kaleidoscope. What did this mean for my future? How can I handle my condition's development? Exactly what is MS anyway? What will my kids think? How will they feel? All I knew for sure was the kids were my priority, and I had to take care of them first.

    I imagined a diagnosis of MS meant a guaranteed wheelchair. I already walked with a cane, and my two boys said that was "kinda cool." However, a wheelchair might seem kind of freaky to a teenager. Often freaky is just different, but I did not want them to think I was freaky or even different. I surely did not want them to ever be embarrassed to be seen with me. In reality only 40% use wheelchairs, and some use them only part time, but I did not know that then.

    I worried about how to tell them. I remembered an earlier time when I needed surgery. I told them I would be in the hospital about a week. The younger one was little - he hadn't started kindergarten - so he did not understand how serious the surgery was. He asked, "Who will take care of us?" When I assured them they would be fine, that was all they needed to know. Now they were teenagers and not so easily appeased. I was afraid they would think my illness and disability would rub off on them. I was determined to be sure their lives were not interrupted by my new lifestyle as an MSer. I wanted them to feel as "normal" as any teenager could feel.

    Years earlier, before they were teenagers, I had broken my foot and was walking with the help of crutches. My boys didn't think differently about me except I just happened to walk with crutches. They certainly noticed how difficult it was to get through heavy doors. They had fun playing with them, and then retrieving them when I couldn't walk to the other room where they left my crutches after playing with them. I hoped they could treat my MS the same way — as just another broken foot. But I was afraid they would put me in a whole new category. I hoped they understood that a wheelchair is simply an aid for a person who had an accident or has a disease.

    All this worrying, and I wasn't even in a wheelchair. Why did I suddenly fear they would consider me freaky? I think that was my own fear of MS. Maybe I was afraid of what I would think of myself. That might be why I put off getting a wheelchair when I clearly needed one. Maybe I was afraid I would not consider myself as good a person as I used to be. That was an unrealistic fear, but it was definitely a fear I had. I was the adult, but I was afraid my kids would think I was less of a mother. Was I the only parent to think like that?

    How did they react to my MS?
    • They put together a small team to walk for MS that spring.
    • They wrote a paper on MS for school
    • They were angry seeing unmarked cars in parking spaces designated as handicapped and telling their friends to stay away from those spaces.
    • They were protective of me.

    In my early years of living with MS, I burdened myself with stress by worrying about what my boys would think and feel. That was unnecessary. It was unlike me, but MS was unlike me, too. Was this kind of worrying just part of MS? Is this just a type of the cognitive difficulties that is a symptom of MS, or is it a normal parent's over-reaction? Am I the only one who has had these feelings?

    It turned out that it was not true, and my fears were unfounded. My caregiver tells me fear really is F.E.A.R. (False Expectations Appearing Real). I didn't need to worry about my boys. To them, I was just a mom who developed a condition. That was good.

    Let me know how you felt when you had to tell your children about your MS. Did you over-react as I did, or was I the only one?

    Give your stress wings and let it fly away.
    ~ Terri Guillemets