My children were in their early teens when I started having my MS symptoms. For a number of years we had no diagnosis but we had some issues we dealt with on a regular basis. Fatigue was the worst of it, and the kids learned to recognize when I had reached my limits.
When things got worse and I ended up at the MS clinic the kids were older and could accept, or so I thought. I remember one trip to the MS Clinic, when my daughter drove me downtown to the hospital. She waited for me while I made the rounds, nurse and neurologist.
When I came out she rushed to the elevator and I thought she was impatient, but she was scared and upset at seeing the other patients with greater degrees of disability and feared for my future.
I also remember reading a story about a younger woman who began using a cane and faced her young daughter’s upset when the mother went to her school. A very emotional experience for both.
There’s an article I’ve given the link to, about talking to your children about your illness. The only comment I have is that children are more perceptive than we give them credit for. They often sense something is wrong, and without any real understanding they can create a monster scenario.
When I found my condition changing and I could no longer do the things I’d always done, I felt I needed to give an explanation to my grandchildren, so they didn’t think I had abandoned them, or worse, didn’t love them.
I spoke to my one granddaughter, thought I had done a satisfactory job of it only to find she had interpreted things differently. She went to her mother and commented how sad she must be that I was dying. What? That’s not what I said. But a distant relative, a grandfather had died after being sick and she had equated that people of our age who got sick...died.
No matter how well you think you’re hiding your symptoms, they are called symptoms for a reason, something is wrong and people will notice things are amiss, even if they don’t know the what or why of it.
It’s a personal decision who you tell about your diagnosis, family, friends, your employer. Make it wisely.
Here’s the link: