It is partly up to the child if they are in a situation like having dinner at someone else’s house, to say, “I’m sorry, but I can’t have that” or, “I can have a little of that but I can’t have a lot.” They have to take responsibility too. You should make it as comfortable as possible for other people, and have them understand what this is like, what’s out there for medications, and what’s out there for support. That’s what we do with our family– we just let them know. Family was a great help and support for him; they encouraged him by telling him, “this is going to get better. This is going to be fine.” It was also helpful for us to know that there were other places we could go for support, and we were not afraid to seek out those other places.
One choice that we made was to disclose his diagnosis and treatment only so far as he wanted them disclosed. To this day, I believe only a handful of his peers know that he has this illness, and even fewer than that are probably aware that he is in the hospital every eight weeks. It has been his choice not to make it something that is part of his life; he’s very private about it. There will be times when I’ll say, “This person had a question. Would you like for them to know what is going on?” Then he’ll make his decision, but we feel that it is his decision to make. Because he wanted to keep it so confidential, we were pretty careful to only have medical appointments during vacations. We’ve always disclosed his illness on medical forms that are required, but it’s been his doctor’s position that in many cases there is no need to talk about it or disclose it if he’s in good health, so we’ve tried to draw a fine line about restrictions. This past year in middle school, we haven’t been able to schedule his infusions so easily, so periodically I’ve just sent an email to his advisor or headmaster saying that he’ll miss an afternoon of school for an infusion. That has worked out very easily.
For a long time I was not allowed to tell anybody anything about Sue’s illness. She did not share with her classmates until this year that she had anything at all. And she would get mad at me, because I of course wanted to share the information with my friends because I wanted the support. Most people, as soon as you explain it, know what it is, so it wasn’t a great mystery. But she didn’t want people to know; she was very private. So I told her teachers; every year I tell her teachers what the story is and what her needs might be depending on the year. So she always knew the adults knew but she never wanted any of the kids to know. So that’s always been challenging. I think she was embarrassed so much because it has to do with your stomach and your bowel habits and you don’t want to talk about that.
Laura was never embarrassed about anything, amazingly. I was the one who worried, and I would advise her not to tell her friends. She’d say, “Mom, I don’t care.” It’s much healthier to be open than to worry and feel like you have something to hide. And because she’s open about it, none of her friends care! Parents should never assume that their child feels embarrassed. A parent might feel embarrassed, but placing the burden of their embarrassment on their child just gives the child another thing to worry about. Let the child be unembarrassed; let them be open about it if that’s what they want to do. I’m proud that Laura is so open about it, and can tell her friends and share with them. I think that has been one of her survival tools.