Fibro Hope

Helping Children with CFS Maintain Friendships

By Mary Robinson, MS Ed


Published from The Pediatric Network


Once you have tackled the medical issues of CFS and have begun to deal with the educational issues, your thoughts may turn to what your child is missing in the way of normal social development. You see other children you know becoming involved in the school band, chorus, or maybe going out for the latest sport’s team. You sit outside on a sunny day while scores of children pass by your home laughing and sharing stories of their latest escapades at school. As you sit there your heart aches for your child who has no such memories to share, no friends to laugh with each day, and no activities to boast about. You may wonder how they can ever possibly be able to function in their world with their peers, when they are homebound day after day. Do not give up hope. While their entry into the world of friendships and socializing may be different than their peers, it need be no less fulfilling.

Depending on the severity of your child’s symptoms their social contact will be affected in different ways. A child who is able to attend a full day of school will find less of an impact on their socialization than the youngster who is homebound for most of the time. However, even these children will face struggles. As we discuss at length in our new book, “A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome” socialization is not an all or nothing thing. For the child who is able to attend school, their friends may see them as healthy. It is difficult for them to explain why they can’t engage in all the activities that their friends do. When they are inconsistent about keeping plans their friends may become less tolerant of maintaining the contact. The adolescent in this situation may be uncomfortable explaining the reasons behind their inconsistent behavior and prefer to be labeled as not dependable, as opposed to ill. Having to explain an illness such as CFS to their peers, and possibly facing rejection or disbelief, is worse than pretending that they are healthy and just unreliable. These children would rather be thought of as inconsiderate than as different. As parents we need to be cognizant of this behavior. We must support our children’s decision to not share all the ins and outs of their illness but also help them to monitor their activity so they do not wind up overdoing it and push themselves into a relapse.

Do not lose hope though. These children can be helped along the path to friendships within the confines of their activity limitations. It is important to respect your child’s wishes on how to handle telling others of his or her health status. If your child chooses to not disclose their health status to their classmates, then they should not be forced to do so, nor should you do it for them. They must come to terms with their limitations in their own way, in their own time. You can assist them in this journey by helping them to come to terms with what they can do. There may be one or two close friends that you may encourage your child to share with in a more open fashion. My children preferred that I talk to the neighbors parents about their limitations so that they didn’t have to explain why they had to quit a ball game in the middle, or go inside to rest when the game was just heating up. By talking to the parents, they could talk to their children, and it made it easier for my child to be understood without having to explain it himself. This worked best when he was younger, and also with close friends and family. As he grew older he learned to share a few details of his illness with those very close to him. He had fewer friends than he had before illness, but they were more understanding and tolerant of his limitations.

If your child is very limited in what he or she can do and therefore does not get out of the house very frequently then you may need to take a more active role in helping them to achieve some social contact. When my son was homebound and unable to tolerate more than about 4 hours of activity a day, we arranged to have his best friend walk over to our house every Tuesday after school for a short visit. It gave him something to look forward to each week. He could catch up on what was happening at school, play some music, or just sit and watch TV together. It gave him something to look forward to each week. It was a new face in his life where he was getting pretty tired of having only me to look at all day long. We found that on these afternoons his mood improved, if only slightly, and it helped to make him feel less isolated and cut off from his world. When he was able to manage it we encouraged him to engage in activities with his friends such as a couple of hours spent at the mall, or an afternoon matinee. Other activities might include having a friend over to play on the computer, or shoot some hoops in the driveway. We always encouraged any short spurts of activity that would put him in contact with his friends. When his friends’ parents asked what he could do, I would explain it to them. By educating the parents ahead of time when his friends did come by, they knew that instead of 2 hours of playing football it was more likely going to be a ½ hour of computer games, or TV videos. When we invited friends over for a specific activity, it seemed to make it easier all the way around.

When my daughter is doing pretty well, and is able to get up and do a bit more we encourage her to make plans with her friends, new and old. We plan things we know she can tolerate, like renting a movie they can enjoy, or a 1-2 hour play date to swim in our pool and relax on the deck and play with Barbie dolls. I try to plan an ending time to these play dates so she doesn’t overdo it. I would rather call a parent to extend a successful afternoon visit, than have to cut a play date short if she can not tolerate her friend’s company for another minute.

When my children have spent a great deal of time at home they always appreciate any opportunity to get out of the house. There are many things that children can tolerate with slight modifications. Some teens love to golf if they can rent a golf cart to ride in. Others may enjoy playing basketball with frequent rest breaks. They do not always need time out with friends, but just time out of the house. Assisting your child to develop talents that they may enjoy is another way to get them involved in things out of the house. My daughter takes piano lessons just down the street. Another child may enjoy private art lessons, or a computer class. By assisting my daughter to develop talents of her own, it gives her things that she can excel in and can feel the sense of pride that goes with the accomplishment. When my daughter’s friends talk of their dance and gymnastics classes, she can share of her piano accomplishments. She may only make one lesson every few weeks, but it gives her something to work towards, and to feel good about.

If your child is not up to doing things with friends, maybe they may enjoy talking to them on the phone. Some children find great enjoyment from email friendships. There are a wealth of sites and groups on the Internet for kids with CFS and I encourage you to check them out, if you haven’t already. One great place to start is the YPWC net site at www.ypwcnet.org.

Look for places for your child to go where they may meet new friends. One teen I know found some wonderful friends from a youth group at church. She managed to connect with a few girls around her age and they got together on occasion to just crash and watch movies and eat popcorn together. Other young people have met friends at support group meetings for other children with CFS. Being able to connect with others in similar situations can be very reassuring for children who may be questioning many things themselves.

I have offered many of my ideas, and I guess the bottom line is this. All people need the contact and interaction of being with others. Encouraging contact with peers is important, but just as rewarding is the act of getting out of the house with other people. Children with CFS may not enter into the world of socialization on the same route as their peers, but they will arrive all the same. They will arrive with a self-confidence and an awareness of the world, and an understanding and sensitivity for others that may far surpass that of their friends.


The Parent’s Corner
Helping our children to maintain friendships by Mary Robinson, MS Ed
(Published in Lyndonville News, March 1999)