When I was diagnosed with Multiple Sclerosis, my children were 14, 11, and 8. Along with the difficulties of dealing with being diagnosed with a disease like MS, came the difficulties of deciding how to tell the kids. I am not sure which is harder getting the diagnosis or answering the questions your kids will ask. For some people, Multiple Sclerosis is diagnosed very quickly due to a rapid onset. For most people getting the diagnosis comes after months or even years of symptoms and testing. Kids are smarter then we give them credit for. They know when Mom or Dad are sick, hurting, upset, and even scared. I think there is controversy about what you should share with your kids. Some might feel that there kids would not understand, or that they might get too upset, or even treat their Mom or Dad differently if they knew the truth.
I was initially diagnosed in August of 2006 but actually confirmed diagnosis in March of 2007. There was a long period of time before getting the final diagnosis. I was bedridden and my cognitive skills were rapidly declining. I too felt that my kids were too young to understand. One day my middle child ( my son) came into my room and laid next to me and as he laid there he kept looking at me. I knew he had something he wanted to ask or tell me but did not know how to say it. Then the words came out. "Mom are you going to die"? I started to tear up. Here I thought I was protecting them and instead my children were fearing the worst. I decided right then and there that it was time for me to do some talking and explaining to them about what was going on with me along with what Multiple Sclerosis is and what it does. The biggest problem I found is that I did not know how to explain something that I did not even understand. Along with that I knew I was dealing with three children at three different ages. I took the time to talk to each one individually at each age level.
This is very hard to do because at that time I, myself did not understand what was going on with me nor did I understand Multiple Sclerosis either. I am a firm believer that if your child is capable of asking a question then they are capable of getting an answer. I do not believe that going overboard and telling an 8 year old all the same information that I would tell a 14 year old is necessary. I could tell them about the pains I felt and I could explain that the doctors were working very hard to help me get better and then the doctors would be able to help treat it. I could explain that I would have some changes in the way I do things and that there might be things that I could not do the same way I used to. But I could not explain what Multiple Sclerosis does and why it causes me the symptoms that it does cause. During that time I had 14 different symptoms that had all appeared at the same time. One of the symptoms was that I would pass out if I was overly stressed or even the change in the air temperature. One day my middle child and I were having an argument and I passed out. I was in the process of coming to. My eyes were still not able to open but I could hear what was going on around me. I could hear my son crying and very upset that he was causing this to happen. It did not matter what we said to him, to make him understand. In his eyes he caused this attack. This is something that will always be in his head and he will never forget.
My point is that if you are not talking and explaining to your kids what is going on. Kids will come to their own conclusions and find that they are blaming themselves for what is going on with you. It is important for you, a spouse, or a family member to take the time to explain to the children about Multiple Sclerosis and to keep the lines of communication open with them.
