Explaining Fibro to kids

This is a tough one. I'd had symptoms for years, but when fibro really started interfering with my life big-time, my kids were little or not yet born...so they don't really remember me as normal - and I hate that!

I got the official diagnosis (which I'd never heard of) when they were 8, 5, and 2. It was such a relief to have a name, and a doctor who didn't think I just needed to get out more, as so many had kindly suggested. My hubby took awhile to come around - he gradually did, although he's not interested in the details. I remember one night in the beginning when I made them all watch a video - a very short documentary on the basics. When it was over, he got up and left the room, without a word (naturally, the kids followed.) I held a lot of anger towards him for years over that one!

He is much more understanding now - the main thing is, he BELIEVES me. The "kids" are now in their 20s, one almost 30. Two are very compassionate, the oldest not so much. The thing in your favor is that there's so much more general awareness these days, even though of course there's still so much doctors don't understand.

As far as literature, I wish I knew of some geared specifically for kids. There's just got to be some! The better you understand it yourself, the easier it will be to gear your explanations to your kids' understanding...I guess I would start out by saying your body feels pain and tiredness (and whatever else is really bad) when other people's wouldn't, and nobody knows why, although they think it starts out in the brain.

It is really sad to have to cut back on what you do with them, I know....my youngest didn't get taken to the park as much as the other 2, and I could never lift or carry her, because I was worse by then....but she doesn't feel slighted in that way. She says she had a great childhood! I think it bothers us more than it does them. I'm sure your kids know you love them, too (obviously, because you care enough to ask these questions!)

Debbie

Amy, my children were 8, 9, and 11 when I was diagnosed.  I didn't really explain much to them.  I told them that I had an illness that made me ache a lot and that it also made me tired.  (My Crohn's disease had happened years ago so they didn't know me when I was healthy.)  That's about all I said.  They don't need the specifics, I don't think.  I didn't want them to know I was in a lot of pain but kids are smart.  They can see that.  I didn't want this illness to affect them, too.  They have their own lives to live.  I was the one with the illness and so I learned how to deal with it.  I guess I'm a very independent person.  I don't ask for help unless there is absolutely no way I can do something.  I'm stubborn to a fault, I think! 

 

I did ask for their help though when having bad days and they never grumbled about that either.  They knew that when they were sick, I was right there helping them out.  Families are supposed to help one another and my family did.  And, by the way, they still are helping me!

 

Sherrine

FibroMomof4

I too like Sherrine tried to not let my Fibro interfere in my kids lives. They knew I was tired and achy alot, But we would play board games and watch movies. When I couldn't pick them up, I had them climb on the couch by me so we could still cuddle. They saw me bring a stool to the counter to cook dinner and knew mom was having a bad day, offered to help, I have to two daughters. On my worse days when I couldn't do anything, there was always quick things for their breakfast and lunch, and my freezer was full of things that could be prepared easily for dinner. They grew up helping me on bad days and learned to respect others.... how bad is that?

I did the best I could, my house wasn't always June Cleaver clean, but not filthy either, I went to their school functions because I am blessed to be on disability and I paced myself for those things, so they don't feel like missed out.

When they got a little older, and asked questions, I answered honestly, with little detail, that is usually all they want. My girls feel loved, and have seen me at school functions, (alot don't), and now that they are older respect me for all I have done with the fatigue and pain, etc I have had. They tell me that I am the best mom ever. I love that.

Debbie