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Hi , For the parents out there struggling with this illness. What are your insights on explaining to your children what you have. Do you tell them everything? Do you explain the disease process.  Does it frustrate your children? Do they understand? What are their comments. How do you explain to them what is going on without scaring them?

I am a single parent of 2 boys who are now 11 and 14. They have lived with this going on with me for 10 years now. They don't fully understand and I don't want to scare them. I am the strong one, or at least I am supposed to be right? When I am having a flare I usually fall apart when the boys are gone. I never let them see me cry or be angry with this disease. I get them off to school and then deal with me. They know about it to a degree because of the having to constantly run to a bathroom. I was just wondering how other parents talk to their children about it or if they let their children in at all to what is going on. This disease is hard ro hide from people.

Oh, I am 40 with UC, diagnosed 10 years ago.

Liz

 Reply posted for ElizabethRN.

I have Crohns (10 years) and two boys, age 9 and 4.  I am frequently in the hospital, and with daily symptoms, my sons' lives are impacted - if I'm tired and can't go outside to play with them, can't go to the beach (no bathroom), etc.  My 9 year old gets frustrated with me sometimes for those reasons, and I certainly understand that and we talk about it.  (I can't go outside right now, but we can play a game...)  When I'm in pain, I let them see me cry, and I am surprised by their ability to comfort me.  When I'm frustrated, I say so. 

I think you should talk openly and honestly about your disease your children.  Kids can sometimes worry that they are part of the problem if they don't understand the facts, and they are certainly not responsible for your illness.  I would sit them down and ask them what they already know about your illness and go from there.  I think they should see your emotions and how you handle things.  That teaches them multiple things - how to deal with frustration, sadness, etc., how to continue on when times are hard, how to find resources (doctors, etc.), how to make decisions (should we go to the beach today or try tomorrow?), how to ask for help (which you probably don't do enough of), how to help the ones we love or to offer help, etc., and etc.  These are all important life skills that you have the opportunity to teach them.  It is awful that anyone has to have these diseases, but look at the good you can do with using it as an opportunity to teach!  They also may worry that they can get your disease too, and you can reassure them that it isn't likely (unless you also have multiple family members with it).  They may need to express some concern or frustration, or etc.  You get the idea.

I'm all for honesty, and our jobs as parents are to raise responsible, emotionally competent children, so give them the opportunity to share in your life with you.

 Reply posted for asohn.

I completely agree that honesty is the best policy. At theie ages they are probably really starting to wonder what is wrong and may be thinking the worst. Perhaps not go into the gory details, but just sit them down and explain to them what is going on.

It is an interesting topic you bring up bc my 4 year old has really been starting to catch on more and more lately. She'll ask me "mommy, can you eat this?" I even took her with me to the doctor's once and she watched them take my blood. Her eyes were wide and she asked a lot of questions, but I think it took the mystery out of it for her. She knows that my "tummy" hurts sometimes and understands when we have to drop everything and rush to a bathroom.  

 Reply posted for ElizabethRN.

My children are 4 and 2.  My 4 year has seen me in the hospital twice in the last 6months because of UC.  I try to explain it to him- but not scare him too much.  he is so sweet he says he wants to be a dr and fix mommy.  in fact when i don't feel well I he gets his little dr set and check me out.  I would be honest how you feel.  11 and 14 can be a tough age -but I would tell them how tired and sick you feel and that you are struggling.  You would be surprised how much they may already catch on-and it might be scarier that you try to hide it- lets their imagination take hold.