CFIDS Profile: Heather K.
Growing & Learning in My First Year With
By Heather K.
Originally published in Youth Allied By
CFIDS, Summer 1997
My name is Heather Kaplan, I'm 17 years old, and I
was recently diagnosed with chronic fatigue and immune dysfunction syndrome
(CFIDS). Although I wasn't hit really hard until this year, I've had it since I
was little. The problem was that nobody knew because I was always sick.
Last August, I got sick and just couldn't
get better. After three weeks, I was well enough to walk and eat, which to me
meant that I could go to school and resume all of my extra-curricular
activities. This basically meant that three to four afternoons per week I'd go
out after school or stay late for clubs. About five nights per week I'd go to
club meetings, out with friends or to volunteer. On top of that, I had a
part-time job on weekends, babysat often and was keeping up with an honors/AP
(college level) school course load. Obviously I burned out. But as always, I
continued most of these activities even when I wasn't feeling well. It was my
way of saying that I could do it and getting sick wouldn't stop me (even though
I was sick more often than not).
When I continued to get sick, my mother
pointed out that what she was seeing in me was a lot like what she saw in my
father, who also has CFIDS. I didn't pay much attention because I didn't really
believe in it. He had made such a common practice of reading articles and
deciding he had things that I didn't believe he really had them. I know it
sounds awful, but he got it when I was pretty little, and because I didn't
understand, I didn't accept it. Now, all of a sudden, I had this, too and I was
forced to believe in it.
I guess I was lucky because I amazingly
skipped the denial phase; I went through it when my father was diagnosed. I went
straight to the depressed phase, and for a while I tried to blame myself and my
parents (CFIDS is on both sides of the family). I realized pretty quickly that I
wasn't getting anywhere and that I had to change my attitude or I'd get more
During the year, I've
gone through one treatment after another and haven't really gotten anywhere.
Most of the things my doctor wanted me to try, I couldn't get medical coverage
for. I've gotten progressively worse in the past months. First, my job went,
followed by my extra-curriculars, two from which I had to "resign" from office.
It was really hard for me. My activities were my life and I had no choice but to
leave them behind. I was already missing around two days of school each
Well, I thought that was bad, but it
got worse. In February I got pneumonia. I missed three weeks of school. After
that, I was completely changed. I was very weak and couldn't do very much. I
went down to half-days at school, and at that, I only go two or three days a
Troubles with Friends
Like most other young persons with CFIDS (YPWCs), I
had to struggle to make my friends understand. Most of them still don't and have
this way of saying the wrong thing. One of my best friends told me last week
that he was sick of watching me kill myself and I wouldn't be sick all the time
if I slowed down. I told him I couldn't go any slower, and if I stopped seeing
people I'd become too depressed to go on. He refused to listen to anything,
saying that this was all my fault and he couldn't stand back and watch it. It
was hard to take, but things cooled down and I think he understands
Through all this, I learned that it
off to slow down and it's okay to ask for help. Although I've had to struggle
with some of my classes, most of my teachers have been great. A few have
modified the curriculum to make things easier for me, and the others I'm doing
okay in, even though my assignments are never in on time.
I'll Keep Reaching for My
I never knew how hard it
was to have a disability (or a few); it's just not something you can imagine
until you have one. But I think that even though I'm physically weaker, I'm
stronger emotionally. I've always been the type of person to make goals and plan
for the future. And when I applied to colleges, I never thought I'd be where I
am now. But I just keep telling myself that I have to keep trying to reach those
goals. It'll probably take me longer than I expected, but I can do it and I'm
going to keep trying until I get there. And if, for some chance, I burn out
before then, I'll always have the satisfaction that I tried my hardest and did
my best and nothing can change that.
I have six more weeks of school, not
including finals, until graduation. I've been told by the principal that
absolutely nothing will stop me from graduating at this point, a tremendous
relief because I have lots to do still. But it motivated me more.
I'm going to attend Boston University
fall. I'm going pre-med; I've wanted to be an immunologist for a long time. I'm
really excited to go, even though I'm not a "normal" kid anymore.
It's kind of weird though, because
sometimes I feel like nothing happened to me. I rested up for a whole week just
to go to my prom and I danced all night and then stayed out til 4 a.m. I had the
best time, and an awesome date. I was in bed for a long time after it, but it
was definitely worth it. It's a once-in-a-lifetime chance.
I guess what I
really want to say is
that if you keep a positive attitude it makes things so much easier and lots
more fun. It may not be the way you used to have fun, but when you're home all
the time, you start to become amused more easily and it's a lot easier to laugh.
I don't like being sick - nobody does - but I think my personality has changed
for the better and I'm proud of it.