Hands On/Hands Off Parenting
For Parents of YPWCs

By Lynn Vanderzalm

Originally published in Youth Allied By CFIDS, Fall 1996

Parenting a young person with CFIDS (YPWC) is a difficult business at all stages, but parenting sick children during the adolescent years presents some unique challenges.

Our nearly 18-year-old daughter, Alisa, was nine when she was sidelined by CFIDS. My husband, Bas, and I were fairly confident of our parenting skills; we assumed that with a few minor adjustments the perspectives and methods that served us well in parenting our older child would equip us for helping Alisa. Right?

Wrong. We were unprepared for the changes we needed to make in our expectations in order to help Alisa through the past eight years.

Dependence and Independence
We all know that adolescence is a time of growing independence. It's a time when young people separate from their parents and test out their ideas and skills in the world of their peers. Normally they do that within the context of school, where they work and compete with their peers and where they get input from other adults. But what happens when CFIDS prevents an adolescent from being with peers or other adults regularly? What if the YPWC is bedridden and stuck at home - with the very people from whom he or she needs to separate? Please don't misunderstand me. I am not suggesting that being at home with a parent is in itself an awful thing. Alisa and I both feel that we have had some very meaningful time together, which we would not have had if she had been in school or active with her peers. But it's not normal, and it's not what she needed.

CFIDS forces adolescents into a dependency on parents in other ways as well. Many YPWCs, especially those in the early teenage years, are not able or willing to talk about their illness. They need their parents to advocate for them with doctors, school officials and other family members. Yet, at times, sick adolescents don't want even you to talk with anyone about their CFIDS; they would rather deny that they are ill at all.

Parenting an adolescent PWC can feel a bit schizophrenic. In the same week we may experience the extremes of our teens' childlike dependency and of their pushing us away. On Tuesday a 16-year-old may be too sick to wash her own hair or a 15-year-old may be too brainfogged to read his textbook for himself. On these days they need us to be right there with them, to do things for them, to take care of them. On Thursday, the same teenagers may be feeling stronger and may rebuff any attempt we may make to be involved in their world at all, even if it's just happening to be walking through the same room when they are talking on the phone.

When we are tempted to become frustrated and confused during these rollercoaster times, we can remember that our kids don't like the roller-coaster any more than we do. They don't like to be so sick that they can't walk to the bathroom without our help. They don't like relying on us for things they would much rather do themselves. If they could, they would choose a different way of relating.

How do we help our adolescents with CFIDS forge an independence when they need to be dependent? Three things may help:

1.     Oil the hinges at our elbows. You may be like me, confused about when to be a hands-on parent and when to be hands-off. Over the years I have come to trust our daughter's needs. When she is dependent, it's not because she is regressing emotionally or trying to manipulate me - it's because she's sick. At these times I can embrace her, give her the security and help she needs, and fill in the gaps left by her illness. At other times, she needs to push me away so that she can separate from her parents and try out her own ideas and dreams. At these times, I must open my arms and let her go. I have learned to keep the hinges at my elbows well oiled so that my arms are ready to embrace her and equally ready to let her go.

2.    Encourage peer involvement. Adolescents with CFIDS often are pulled out of the very social flow that they need to help them establish their identity and build self-esteem. No longer able to be in school full time or be active in typical teenage activities, they miss the opportunities to develop important relationships. Do what you can to help provide peer interaction for your sick adolescent. Make your house a place that teenagers will want to spend time. Encourage your teen's friends to come to your house to watch that video or just to hang out and be together. If your teenager needs to get beyond the four walls of your house, offer to drive him or her to a friend's house, even if it's just to lie on someone else's couch for a night. And allow your sick teens to "go for it" occasionally and attend a concert or party, even if you know they - and you - will "pay for it" for days.

Obviously, I'm not advocating flings that will plunge them into long-term relapses. But 10 years from now they will remember the concert their friends took them to when they were sick, not how sick they were for three days after the concert.

3.    Provide significant adult interaction. When Alisa and I first became sick eight years ago, we were bedridden. We spent most of our time on the two couches in our living room. In those early years my companionship was important to her. She shared her thoughts and fears with me, and she knew I understood because my body was fighting the same illness. However, as Alisa grew older she needed interaction from other adults, especially as she tried to make sense out of a life that she felt had gone wrong. Bas and I are grateful for the many adults - family members and church friends - who have come alongside Alisa in these eight difficult years. They have encouraged her and made her laugh in ways we parents could not. Also, we have given Alisa regular time with a professional counselor who tracks with Alisa emotionally and who can help her grieve her losses and chart a somewhat normal path in a less-than-normal time in her life.

Whatever situation you find yourself in with your adolescents with CFIDS, be willing to let go of your normal expectations, practice embracing when they need you to be close and letting go when they need to flap their wings, encourage peer involvement and provide significant adult interaction.

Lynn Vanderzalm, herself a PWC, is the author of Finding Strength in Weakness: Help and Hope for Families Battling Chronic Fatigue Syndrome.