This article is excerpted from the September 2000 issue of Dr. David S Bell’s medical office newsletter, the Lyndonville News (DavidSBell.com). It is reproduced with kind permission* and the hope it may be helpful for other families struggling to cope with this illness.
ADOLESCENTS AND CFS
The Mother of a Teenage Daughter with ME/CFS Asked:
Q: Everything I read about children & teens with CFS gives me a picture of a calm, sleeping person who is kind and gentle, asking for and taking help from their parents, doing whatever he or she can do to get well.
My experience is anything but that, and I feel like a bad parent. Is this the norm? Or are other adolescents who are ill with CFS like my daughter? Please write something about the stages of acceptance that go along with a teen with CFIDS.
One Young Person’s Viewpoint
(Heidi, who appears in the award winning DVD “I Remember Me”)
A: CFS is hard on anyone, but for a teenager it’s incredibly difficult to deal with. I know. I just celebrated my 20th birthday and I’ve been sick for 11 years.
I went through a little bit of the ‘normal’ teenage rebellion, drinking, smoking, etc., but the majority of my rebellion was done in ways only an ill teenager could rebel.
I would argue for hours with my mother over taking medicine; even pain killers. I could be in so much pain that I was crying, but I still wouldn’t give in and take painkillers because I wanted so badly to control this disease and my life.
It never worked and I always gave in and took the medicine, but it might have been 4 or 5 hours after my mom and I first started arguing about it. We would both be exhausted, but to me it was worth it because it meant that for those 4 or 5 hours I was in control of something that usually cannot be controlled.
Meds weren’t the only thing we used to argue over. I would try to deny I was even sick and go off with friends for the day and try to be ‘normal’.
It never worked. My mom would warn me a million times before I left that I should be careful of what I did. One of the more memorable events … was a youth retreat I used to work with. The retreat started on a Friday night and went until Sunday afternoon. The people who ran the retreat were very understanding of CFS and tried to accommodate me in every way possible. I never listened.
I spent three days trying to keep up with ‘normal’ teenagers. At the end of these retreats, when the ‘normal’ teenagers were exhausted, I always felt like I was going to die. The pain would be horrible. I would sleep for 24+ hours after I came home, but I always left there with a big sense of accomplishment because for three days I pushed myself to be a normal person. Thankfully, my Mom always stuck by my side and would still take care of me even though it was something I had intentionally done to myself.
I will be honest and admit that I still have these types of days although they come less frequently now and I usually don’t push as hard.
Overdoing has always been one of my specialties as a rebellious teen. For years people were telling me that a wheelchair would make my life easier. I refused to admit that it might help.
I would go out to dinner, completely tire myself out, and spend days recuperating from a small thing. I know that walking any distance would exhaust me, but I was too proud to use a wheelchair. I always thought wheelchairs were for the REALLY sick people and I wasn’t one of them. So I fought using them.
I missed out on a lot of fun stuff that I might have been able to do had I conceded and used a wheelchair. It took until I turned 18 before I would use one. They were right. It has helped tremendously.
Although I still wouldn’t say that I give in or use it quietly. I only use it when it’s absolutely necessary and usually it takes a disapproving look from my mother or a few subtle hints about what the morning after is going to be like if I don’t use it.
I also went through a period of hating school.
I was a straight A student for a long time. Then, much to my mother’s dismay, I refused to do any schoolwork for two months. They did everything they could to try to convince me to do some work. In a valiant effort, my parents started taking things away from me, first the TV, then the computer, then my stereo. None of it worked. They even tried bribery.
I was mad at school. It represented everything that I had lost and I wanted nothing to do with it.
I truly believe that my parents could have left me alone in a room with nothing but schoolbooks and I still wouldn’t have done any work. In time I worked out my anger and understood that I could put it to good use, but I needed that time to figure it all out.
These stages might have been difficult on my parents, but I believe I needed to go through every one of them.
It was all a control issue. I needed to try to have control over this disease that was so unpredictable and had moved in to try to take control of my life away from me. This disease isn’t fair. It fights dirty and it has robbed me of everything I once loved. I had to fight back and I fought back in the only ways I knew how.
This so-called rebellion gave purpose to my life. It kept me alive and it kept me from giving up. If I hadn’t fought so hard – and I still have to fight hard – I wouldn’t have accomplished everything I have. I now have a 4.0 GPA and almost a full year of college completed. If I had sat back, accepted the diagnosis and approached this disease with passivity I still wouldn’t have graduated from high school and I probably would be a lot sicker than I am now.
Rebellion was just a sign that I wanted things to be different.
So even though your child may be rebelling against everything that has to do with CFS, don’t get frustrated and argumentative. Look at it from our point of view. We’ve lost everything that is important to a teenager and being a teenager is hard enough without the added stress of CFS.
One Parent’s Viewpoint
(Mary Robinson, co-author of A Parent’s Guide to CFIDS*)
A: I don’t know what I can add to Heidi’s account of her journey to acceptance, which she is still on, by the way. But I do know that this struggle for control is a big one for parents and adolescents with this illness.
I experienced it with my son and now my daughter, and I talk to many parents who are caught in the unending battles with their own teens about how to handle a teen who will not listen to the adults on what they feel is best.
I guess I have a bottom line philosophy on how to deal with this…. BELIEVE in your child, and TRUST your child! In my experience these kids do not lie about how bad they are feeling. They do not lie about the fact that they can’t do any more schoolwork. At least in their eyes.
The reason, as Heidi mentioned, may have more to do with control than a physical inability, but it is real.
As parents we reason that if they would just push through the fatigue and headache, they could do that chapter in history. If they would break the assignments into manageable segments of 3-5 minutes each, they could finish the Math paper. But stop and think for a minute of how frustrating it must be for these kids to have to do that!
As a healthy adult I would feel like giving up if every accomplishment I made was in 5 or 10 minute spurts between pounding headaches. I try to remember this when my daughter is saying she just can’t face that assignment.
So what am I advocating? To just give in and say they don’t have to do any work? NO, not at all. I am saying to listen to them, and believe them when they say they are in pain or they can’t think. I tell my daughter that I know it is hard, and that I won’t pretend to really understand because I can’t, I don’t have this illness. But it is my job to help her to do all that she can do, and to assist her to become all that she is capable of becoming.
While understanding the incredible challenge that schoolwork brings, I offer to help come up with ways to work together to get the work done.
• I may read the chapters with her and search for answers together.
• I rewrite math problems from the book so she can save that precious energy, and I act as a scribe writing answers that she gives to me.
• I do whatever I can to make it manageable for her. And when she has had enough, I respect that and plan another session while praising her for whatever she has accomplished.
There were times with my son, who was ill during his early to mid teens, that I really didn’t know what to do.
He would say for days that he just wasn’t up to schoolwork, or socializing. And my husband and I struggled about what to do. Then he would have a good day and go into overdrive to get caught up. I guess what we learned to do was to stop looking at things for today or for this week. We started to look at the big picture of what we needed to accomplish this month or this year.
• He needed to get out of the house when he was really not getting out much, and we could usually get him to agree to a drive for ice cream or to relatives for a short gathering.
• With the schoolwork, when we looked at the individual assignment he was to do we would ask ourselves what the relevance was to the entire course. We found that constant and ongoing communication with his teachers was very helpful in knowing what the real bottom line was for him to pass the courses, and it helped us in eliminating unnecessary assignments.
I think sometimes parents don’t make the teachers realize what problems their children are really having, and so the teachers do not understand exactly how to help. And as healthy parents we may need to rely on our children to help us to understand.
When I stressed that we needed the real "bottom line" curriculum, they came through.
For us this helped at school and at home. We learned that a few weeks of "no schoowork" was not the end of the world, if that is what he needed. Our son knew we were trying to understand and to help. In turn he tried to do what he could manage, when he could manage it.
Some parents may need to accept that for some teens high school may take more than the customary 4 years.
I think that we need to help our children to see what is attainable and possible and then help them fashion their goals so they can get there. I may be living in a glass bubble, but I believe the most important thing we can do for our children with CFS is to trust them and believe them. I think we can still be parents, encouraging them to work, setting certain limits, and help them to set and reassess their goals without giving up our trust in them.
Here I am referring mostly to the child with severe CFS. But I believe the same holds true for moderate cases.
These children may be able to do more than the severely ill child, but still their workload and ways to accomplish it will need to be adjusted. These children may enjoy time out with friends and should be encouraged to do so. This is an important part of growing up for all adolescents.
But what do you do when the teen puts all their energy into socializing and none into schoolwork? That is a tough one – but it is a normal parent’s problem as well. I think one of the hardest tasks of parenting is knowing how to deal with this adolescent rebellion. It is made harder by CFS, as Heidi pointed out, for the child and the parent alike. While we need to be understanding, we also need to be the parent.
It can be a monumental task sorting out what is CFS and what is just adolescence. It is a job for which there are no right and wrong answers.
I look deep into my heart and ask how I would want to be treated. I try to see life from my child’s perspective, I try to listen, I do the best I can, and I struggle anyway with my choices every day.
* ©Bell, Pollard & Robinson, 2000. All Rights Reserved. For permission to reprint any excerpt from the Lyndonville Journal, please direct your request to DavidSBell.com. Mary Z Robinson is a co-author with Dr. Bell, Jean Pollard, Tom Robinson, and Bonnie Floyd of A Parent’s Guide to CFIDS, Haworth Press 1999.