When do I tell? (chronic disease and kids)

In My Humble Opinion
1

As I posted a few years ago, I have been diagnosed with multiple sclerosis. So far, I’ve only had one relapse after the first one - just enough to get an “official” diagnosis - but I’m responding well to Copaxone and I have no impairment in between relapses.

I’m wondering now about what I should tell my kids about it, and when. I have an (extremely bright, and somewhat anxious) 7-year-old daughter, and a 3-year-old son. I think that my daughter remembers me going to the emergency room, but not a lot more than that. It doesn’t really come up day-to-day, but obviously, at some point, I need to explain to them that I have a chronic disease that is likely to cause more and more symptoms over time.

Do I wait until I’m actually suffering again? Do I wait until they get to some particular age (and what should that age be)? Do I just keep a lid on it until they know without being told (could be a long time - my daughter can be pretty oblivious)?

Anyone BTDT, or have any other words of wisdom for me?

2

I think you want to avoid having “A Talk” about it: for an anxious seven year old, a formal talk will make the whole thing seem terribly dire, no matter how it is presented.

I think you want to start bringing it up casually, so that it’s just something they’ve always known, and answer any questions they ask candidly, without overloading them with details. Do you take daily medication? That might be a good place to start: “What’s that?” “Daddy’s MS medication” or “Why are we at the pharmacy?” “To pick up my medication”. “What is it for?” “To keep my MS asleep”.

3

My mother had serious heart disease since before I was born. Trust me, your 7 year old knows something is wrong and/or different about you vs. other moms even if she doesn’t remember your trip to the ER. Kids pick up on this.

The problem is, if you don’t say anything the kid’s imagination may take over and paint scary pictures for her. I also agree that a Formal Talk is not the way to go, either. Manda Jo’s suggestion is spot on - bring it up casually. “Mommy has to get her MS medication. Do you know what MS is, honey? It’s a disease, but the medicine keeps it from being bad and helps keep mommy well.” A kid that age wants to know that, even if mom is sick things are under control. Even if you go to the ER, the approach with the kid should be “mommy’s MS is bad right now, so she’s going to the ER because that’s where she needs to be to get better.”

Don’t try to pretend everything is perfectly OK, because she’ll know it isn’t. You need to keep the information age appropriate, but she’s old enough to understand something of what’s happening, and as she gets older so will her ability to understand. I recall as a kid there was a tendency to keep me entirely out of the loop. After mom’s first heart surgery everyone else filed into the room to see mom but I was not allowed to - and trust me, not knowing conjured up FAR worse scenes in my mind than how a person actually looks after such surgery. At least in my case, it would have been kinder to let me see mom for a couple minutes than to leave me wondering for years what horrific scene was occurring in mom’s hospital room.

Of course, this varies with kids - I have a far higher tolerance for that sort of thing than one of my sisters, who was probably traumatized by being dragged into that room when really she wasn’t prepared for it and didn’t want to go. You’ll have to consider the personality and traits of each child, rather use a blanket statement of “Y is OK at X age”. At a certain point it becomes appropriate for a child to visit the sickbed of someone in the hospital, but I’d suggest giving the kid an out: “You can come in, but I just want to let you know, if you start to feel upset or uncomfortable it’s OK to leave. Some people find this more upsetting than others. How you feel is OK, as long as you’re honest about it. It’s kind to visit people in the hospital, but if you start getting upset you need to politely leave because the sick person needs their energy to get better and it would be unfair to add to their burdens.” There were times I went with everyone else to the hospital and spend more time in the waiting room than visiting mom because on that particular day I didn’t have as much cope as another. Kids need to know there is nothing wrong with that, because too often they try to fulfill the expectations of others in these matters (especially if they’re the sort that think good behavior on their part makes mom better and bad behavior on their part makes her worse - it’s not rational, but it’s not uncommon at certain ages for that sort of notion to take hold).

Another thing to remember is that, even as an adult, how people react to illness in others varies enormously. I have a sister who can’t deal with medical issues in our parents at all, and another whose a hospice director with nothing but dying patients mostly our parents’ age. When mom was in her final months Dr. Sister was heavily involved in the medical stuff, but my other sister couldn’t handle being in the same room as mom - she helped out with house cleaning, grocery shopping, and running errands so the rest of us had more time and energy for the medical crap and it was totally OK with me. Sure it would have been nice having more help cleaning up mom, but at least I didn’t have to deal with mom AND the house! Working within our limitations kept us all sane and the arguing to a minimum.

I guess what I’m saying is that, I’m sorry you have a serious chronic illness like MS, but it’s part of your life now and you can’t, in fairness, insulate your kids from that fact. They’ll know you have a problem. If you keep them informed they won’t have unnecessary fears, but they don’t need to know ALL the details.

4

Everything Broomstick said.

Kids know something is up.

TELL THEM! For the love of everything you hold dear! Let them know in factual, non-emotional terms AS SOON AS POSSIBLE what is going on with you, what that means to day-to-day life, and what some of the symptoms of the disease are.

If you can’t do that, get a friend or family member or the doctor to explain it.

Tell them especially what *might *happen:

“I might get really sick some morning and have to go to the hospital in a hurry - that’s normal for me now. The hospital will know how to help.”

“I might get dizzy sometimes, and that’s ok. It happens.”

“I might lose feeling in my feet and have to spend a few days in bed. It’s ok. It feels a little weird, like my feet have fallen asleep.”

“I might have bad eyesight sometimes, and have to get other people to drive for me. That’s ok, sometimes it gets better or worse.”

You don’t have to lay everything on them all at once, but you do need to front-load this so that it’s all out in the open and has been talked over. Don’t make it a secret, don’t make it a big deal, just something that happens now.

Please, take your time with it, but let your kids and family know what to expect! If they don’t know to expect different symptoms and changes, they will be a lot more scared and worried for you when things do happen, and then when you’re feeling bad, you’ll ALSO have to explain what’s going on to everyone.

Knowledge is power, and knowledge is also a form of stability. If they’re aware of what’s going on, they’re much less likely to be creating awful scenarios in their heads of how bad things might be.

5

You’ve gotten some good advice here, so I’ll just add a strong repeat of what Lasciel just said - the things your kids imagine will almost certainly be much worse than the truth. Especially if you have an anxious kid in the first place.

I was a kid who wasn’t told much about what was happening, and I spent a terrifying amount of time in my childhood imagining the horrible things that were happening to various members of my family. It turns out that some of the things that were happening were fairly bad. But not anything like I was imagining. My sister was in the hospital, but she was not dying.

Conversely, when my classmate’s mom died and I came home from school freaking out, my mom said, “Well, honey, there’s no reason to think that anything will happen to either one of us. But if it does, you’ll have the other one, and you’ll get through it. What if something happens to both of us? (Preemptive response - she knew where I was going.) That’s REALLY unlikely. But if that happens, it’s written down in our lawyer’s office that you’ll go live with Uncle John and Aunt Melanie. They love you and they would take very good care of you. But that is almost certainly never going to happen.”

I think I spent about 10 minutes thinking about how sad and scary that would be, and then moved on. And every time I thought about it in the future, I had an answer. It might sound counterintuitive - that talking to a kid about both parents dying would be unnecessarily scary. But I knew there was a plan, and I was comforted down to my bobby socks.