The Paranoia of Motherhood with ME/CFS – Will My Child Develop ME/CFS?

I feel blessed to be a mother and it is a privilege that I never thought I would get to experience. I was resigned to the fact that I was never going to have any children, as my doctor told me at the young age of 21 that my body would never be able to handle the physical stress of pregnancy and childbirth.   When I discovered that I was pregnant, I was at first in shock, then upset, then super excited and happy.  I was going to be a mother! 

Then as the whole concept of motherhood started to settle in my brain, I couldn’t help but wonder if I would pass along this debilitating illness of ME/CFS to my child?  There is not a whole lot of information on pediatric ME/CFS  and you really don’t hear a lot of stories regarding children with CFS even though I’m sure there are plenty out there suffering.

The theory is that ME/CFS may have a genetic component but there hasn’t been any hard-hitting evidence that confirms it, just like there still isn’t a proven cause – just many, many theories out there.  So when you are a mother who has ME/CFS, you fear that you will pass this illness along to your child and we find ourselves looking for the signs in our children.  My son has been very healthy but, as a CFS mother, the normal, common illnesses that every child gets will cause me to think, “Oh no – that sounds like CFS”.  If my son says he is tired, if he says his back hurts or his neck hurts, I find myself getting paranoid thinking – “I hope he isn’t getting CFS!”.   The paranoia doesn’t last long and the thoughts go away, but whenever he gets sick or has any sort of complaint, the CFS is usually my first thought.

I’m sure it’s like this for any parent who is chronically ill.  It’s normal to worry that we have passed something genetically on to our children.  I think the important thing to remember is that we don’t let our fears be known to our children and that we don’t start running our children to the doctor over every little complaint they make.  Children are going to get tired and have normal aches and pains like everyone else.  When the fatigue and aches and pains become the norm is when we need to start worrying and investigating the problem.

I have also talked on this blog many times about the guilt us ME/CFS mothers feel.  We feel guilty because we are sick; we feel guilty because we can’t do all of the things with our children that we would like to do; we feel guilty because we can’t financially provide what we want to for our children because we’re too sick to work at all or work enough to make a decent income.  The guilt can go on forever and bury us if we let it.  We can also feel guilty because we knew we were sick but we decided to have children anyway, even if they weren’t planned. 

For me personally, not going through with the pregnancy was not an option and every family has some sort of illness that has been passed down through the generations:  heart disease, cancer, diabetes, etc.  We can’t live life like that or no one would ever have any children.  I have been truly blessed with a healthy, intelligent, wonderful child and I am thankful everyday that he is here.  If he would develop ME/CFS sometime in the future, he will have all of the love, support and care he needs from not just his mother, but from someone who knows what it’s like and can help him better than anyone else ever could.   Hopefully we won’t ever have to cross that bridge but if that time would come, we know how to deal with it!

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  1. Great post! I have often wondered how parents with ME/CFS do it. It never dawned on me that the thinking process would include worry over your child getting sick but I can so understand that.

    You are right. Life isn’t fair and all we can do is what we can do. I have no doubt, that no matter what comes you will be an incredible mother and a wonderful support.

    I pray that your son remains healthy and ME/CFS free.

  2. Thank you for sharing! I have thought about that time and time again to the point l felt like l was going crazy. Every pain she had , every cry, every time she looked tired. It’s hard to ever imagine your child going through something like Cfs. I don’t know your severity but mine changes a lot from ok to really bad and when it’s bad l am so tired and l say to myself l pray my sweet baby never feels this. Like you said l will be there100 percent and help her. I pray for you and your child. Thanks again for sharing.

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