Back to School Without Your Sibling

For Siblings of CFIDS Kids (SOCKs)

By Katherine Moore

Originally published in Youth Allied By CFIDS, Summer 1996

As the time nears for kids big and small to head back to school, many things are happening in the homes of young persons with CFIDS (YPWCs). The YPWC may be getting ready to return to school and preparing him or herself for weariness, difficulties and questions from teachers and classmates. Or he or she may be homebound. But no matter what, the SOCKs are heading back.

A SOCK is a Sibling Of a CFIDS Kid, and there are many out there like myself. As we go back to school, there's a lot for us to think about. We buy notebooks, pens and pencils, we meet our teachers, we look for someone familiar in the lunchroom. And yet, as we try to settle ourselves into the new year, we can't forget that we are SOCKs and that there is a person in each of our lives who isn't settling in so easily. When YPWCs are making tough choices about school and trying to deal with the possibility of not being there, a SOCK must deal with that as well. I have been a part of this for a few years and I can truthfully say that it's not easy for anyone.

My older sister Rebecca, who is 19 and graduated last year, had a rocky road getting through high school. She did some learning at school and some at home.

As she was struggling with her school issues, I was having a different sort of struggle which I think all SOCKs can understand. I was a sibling of someone everyone was curious about and it was up to me to let them know what was going on. I felt I had to be informative and caring and, in a way, the perfect sister. I didn't want people to think, "she's too busy to talk about her own sister," or, "she doesn't know exactly what's going on with her sister." This was very difficult.

Since Rebecca became sick in high school, the only people with me in middle school who knew that she was sick were her former teachers. But sometimes they asked tough questions! I remember when I was 11 years old, my sixth grade teacher asked me what medicines Rebecca was taking and what treatments were being used. I wasn't sure, and when I couldn't give a good answer I felt guilty that I hadn't known. At that time, I didn't understand most of the medical language that was circulating around my house and I wasn't sure if I wanted to understand. It scared me. But as time went on, I began to learn what CFIDS was all about and I did my best to understand.

I didn't face the problems of talking to her former classmates until this past year, when I was a freshman in high school. The juniors and seniors remembered her and were curious about why she had seemingly disappeared. I did my best to tell them what the past couple of years had been like for her and to briefly explain what CFIDS is. But this was more difficult than talking to teachers, because many of these kids had been friends of hers and were more interested.

While I was glad to have support for my sister and for people with CFIDS in general, I started to feel as if I wasn't Katie anymore. I was just "Rebecca's sister." And as I became friends with these kids, I felt hurt when they started conversations with, "how's your sister?" instead of "how are you?" I love my sister very much and I was happy that her acquaintances were concerned, but I began to feel like I wasn't as important as she was. This was not a new feeling; when I was 11 and Rebecca first became sick, I was jealous all the time, as she went from doctor to doctor and all of my parents' friends were concerned about her. But now it was different. It wasn't attention from adults that I was jealous of; it was attention from teenagers, from potential friends. I was also angry that, although they would always ask me about her, they never would take the time to call Rebecca herself and have a talk. But I managed to control those feelings and to understand the situation that I was in. So during the first few months of the school year, I did my best to talk about CFIDS and use their questions as opportunities for advocacy.

As the year went on, kids stopped asking about Rebecca. In a way I can understand this. Life was busy for them and since they didn't see Rebecca often they didn't think about her much.

As I was making new friends and having all sorts of new experiences in high school, I no longer felt that Rebecca was more important than I was. In fact, it was the other way around. I felt like she was forgotten and it made me sad. I began to think about how Rebecca had become sick when she was just a bit older than I. She had missed out on many of the things that the juniors and seniors in my school were experiencing.

In response, I wanted to do something to promote awareness of CFIDS; it seemed to be the best way for me to help her. So on May 12th, I gave speeches in a couple of my classrooms and handed out over 100 blue ribbons to my classmates. Feeling guilt is a large part of being a SOCK, at least for me. I often feel as if there are things I could be doing to help my sister and the whole cause, but that I'm just not seeing them or caring enough. So my May 12th activities seemed to be the perfect solution. I was able to make near-strangers aware of CFIDS, Rebecca's old friends remembered her and I felt as if I'd finally found something I could do to help.

Being a SOCK is a difficult thing. There are times when I wish I could take CFIDS from my sister and carry it myself, and I'm sure SOCKs all over the world have felt the same way at one time or another. Through these past five years I have felt many, many emotions including confusion, jealousy, anger and sorrow, but I have never stopped loving my sister. And sometimes, love is all we can give to our brothers and sisters. I doubt I will ever discover a cure for CFIDS or bring back Rebecca's old friends who have moved on. But there are things we can do to help our siblings, even just spending a good half hour talking and sharing. CFIDS has brought my sister and me closer than I would ever have thought possible.

Though school is one of the hardest places to go when your sibling is sick, there are ways to turn school into an opportunity to help, and to find help from others. This is something I have learned first-hand, and many of you have, too. Being a SOCK is something special in many ways, and school is one place to see it.

Katie Moore enjoys reading, writing and playing the violin. Her sister, Rebecca, is the co-founder of CFIDS Youth Alliance.