CFIDS Profile: Teens Overcoming
Teens Overcoming CFIDS,
Originally published in Youth Allied By CFIDS,
Teens Overcoming CFIDS (TOC) is a
support group of teenagers who have chronic fatigue and immune dysfunction
syndrome (CFIDS). We have been a small group, with only three members, for a
little over a year now. At our meetings we talk, laugh, watch movies, go to
amusement parks (albeit in wheelchairs) and do other stuff that healthy teens
do. We try to get together about once a month, depending on our health. We came
up with the positive name, Teens Overcoming CFIDS (TOC) for our group. Here are
our individual stories about what TOC means to us:
Having CFIDS as a teenager means missing out on lots of things in life.
One of the hardest things I've lost are most of my friends. When I first got
sick they would occasionally visit but soon gave up when I didn't feel good.
When I did feel up to visiting it was awkward. My life had become so different
from theirs. While they were interested in the latest gossip, the only thing I
could think of was how horrible I felt.
My YPWC pen-pals filled the void, but I
still felt there was something missing. I then tried going to local CFIDS
support groups, but the members were all parents and grandparents who mainly
talked about Social Security and disability - things I don't have to deal with.
What I needed was a local support group for kids.
Through fliers and CFS Youth Outreach (CYO,
now CFIDS Youth Alliance) I met two other teens, Carrie and Rachel. Despite
living rather far apart, we are able to meet occasionally, and when we do it's a
lot of fun. We help each other cope and understand what the others are going
through, because we are experiencing it, too.
first got sick with CFIDS my friends were really great. They came to visit me
and called. Then, slowly, they started to disappear. I took that really hard! I
thought, "How could they just leave me?"
Through CFS Youth Outreach, I found a lot
of great friends. Luckily, I also found two friends who lived close to me, too.
I was excited! The first person on my list was Lara Hardinge. Then, a few weeks
later, I called Rachel Kanouse. We then formed TOC! Rachel and Lara help me a
lot. We go through everything together and we experience a lot of the same
things. With CFIDS, you need to help each other out. You can't battle this
In May 1995, Carrie Smith called me and told me about Lara. We found out
that we all lived about an hour away from each other, and we decided to form a
support group. We met for the first time at Lara's house. At our second meeting
(at Carrie's house), we came up with the name, "TOC" (after much difficulty).
It's still only the three of us in the
group, although we're always hoping for new members. It means a lot to me to
have two friends who will be there for me, and who understand and go through
some of the same problems I face. It's nice to be able to just have fun with
them, and not feel guilty about feeling bad. When I see them, I am also reminded
that just because we have CFIDS it doesn't mean our lives have ended.
Although we're not a "support group" in the
generally used description, I am still happy with our little group. We offer
support and fun to our members - all three of us.