The Road That Was Taken:
College as a PWC
By Regan Harris
Originally published in
Youth Allied By CFIDS, Summer 1997
"You go to college and
you have CFIDS???"
This question has been posed to me
times over the years in one form or another. Sometimes I ask myself how Iíve
been able to get through college even though I have chronic fatigue and immune
dysfunction syndrome (CFIDS). There are times when I feel Iím being unrealistic
and other times when Iím so busy trying to survive that I canít allow myself to
feel anything. But there are other times when I realize that, despite the
struggle, it has all been worth it.
I started college in fall 1993, determined
to start a new life. I had gotten sick my freshman year of high school, with
most of those four years spent trying to adjust to my new body, progress
academically and, well, simply survive. I was excited to go someplace where no
one knew about those years.
My first week or so at college surpassed
all my expectations. I was functioning pretty well, having a blast making
friends at orientation activities and enjoying my classes. I seemed well on my
way to being a "normal" 18-year-old and I was blissfully happy.
This made my crash even more difficult.
Suddenly I was again having to deal with feeling like I had the flu and being so
weak and tired that it was hard for me to walk across campus. The honeymoon was
over and I now had to deal with the fact that CFIDS had accompanied me to
Different Challenges and
Being sick in college, I discovered,
different ramifications than it did in high school. For example, even if I felt
too sick to go to class, I still had to get up, get dressed and walk for a few
minutes to get to the cafeteria. I was suddenly responsible for things such as
laundry and dishes in addition to making it to class and studying. Not that I
didnít want to do these things for myself, but they took energy.
On the other hand, there were definitely
some "ups" to college versus high school. I only had one or two classes a day
instead of six and I could go back to my dorm to rest in-between. I didnít take
early morning classes, so I never had to start my day before 10 a.m.
Socialization was easier, too. Even if I had been too sick to do much of
anything all day, I could still have a few minutes of conversation with someone
while brushing my teeth. Because I lived on campus, meeting people was easy and
extremely fun. I struggled with keeping up with my classes that first semester
and I had to drop a class, but I made it through with grades I was proud of ó
and no incompletes!
However, the next semester marked the
of a very tough period for me. I struggled a lot, both physically and
cognitively. It was hard for me to walk to classes and I had a lot of trouble
with concentration and excruciating reading difficulties. I also rather
foolishly tried to take 16 credits (six classes) so I could be a sophomore the
next year, like my friends. I finished the semester with four incompletes and
only two grades.
The following semester, I was still
to finish the four incompletes, plus take three new classes ó the bare minimum
required to be a full-time student.
I had five infections that semester
of everything else and people were starting to question whether I really had all
the physical and cognitive problems I claimed. Most of my professors tried to
understand and went out of their way to help me when they saw I wasnít trying to
take advantage of them. But there were other people who stopped understanding. I
didnít know how to respond to a lot of the things people said, like, "Everyone
has trouble concentrating sometimes, what makes you different from any other
student?" or, "why donít you just push yourself to go to class more?" I knew I
had CFIDS and that most of the time I was in class I felt tired and/or sick, but
there was no escaping the fact that I did "always seem to have an excuse."
I finished the semester with three
incompletes. I finished the fourth incomplete from the previous semester over
Christmas break and much of the work in my three new courses; enough to prevent
me from getting incompletes in them. Academic advisors told me that although my
grades were good, having as many incompletes as I did was unacceptable. I was
beginning to feel very scared about my ability to succeed at college and
ultimately, in the real world.
Why Not Take Time
A lot of people have asked me: "Why
you take some time off or maybe go to school part time or something?" Some of
the reasons I havenít done that are practical. I would lose my health insurance,
scholarships, financial aid and housing priority if I dropped below full-time
status. Also, my symptoms are varied and unpredictable. Itís impossible to say
how Iím going to be doing in a couple of days, a week or even an hour, so
sometimes what Iíve thought of as a major crash is gone by the next day.
There were other more intangible reasons
well. When I was first diagnosed back in high school, my doctor told me I had to
go to school every day unless I was vomiting due to something other than CFIDS
or had a temperature over 101į. If I didnít, he wouldnít treat me. He wanted me
to learn to go to school sick, so I would not drop out while waiting for a
recovery that might never come.
For better or worse, I had internalized
that attitude. I knew I was already different from my friends who could take
16Ė20 credits, do sports and extracurricular activities and didnít have to rest
after a shower. I was afraid if I went part time or deferred I would lose ground
and never be well enough to gain it back. As hard as college was, I loved my
friends and my classes and dorm life. I was scared of losing them.
Working Around my
The following semester again brought
of infections and I became even more aware that I looked like someone who
couldnít quite keep it together and handle her life. So I tried to compensate. I
pushed myself to get to class more and act more energetic and intelligent even
when I felt really sick. I remember once I left during the class break, threw
up, came back and tried to raise my hand a lot so the professor wouldnít think I
was trying to look or act sick to get attention.
I also began to develop techniques
getting around the reading problems. I donít know if I actually changed anyoneís
opinion of me, but thanks to some miracle, I finished the semester with no
incompletes and only one poor grade, a D from a professor who I had problems
with due to CFIDS.
Another miracle was that my reading
dramatically improved, at least for "easy reading." I canít explain it, but one
night I could suddenly read without struggling over every sentence! For years
before that time, I would agonize over reading and would get thrown off-track if
there was a hyphen in a word. I was now able to lose myself in a book. I was so
happy I cried.
By my third year, my reading had improved
even more and I was able to read textbooks with greater ease. I was also gaining
more experience in pushing through and compensating for my symptoms. I finished
the semester with only one paper outstanding and I got a 3.88 GPA ó my highest
yet! That was a startling epiphany for me. I had been told that my grades
wouldnít be as high if I didnít get extensions, but that semester, I had met
most of my due dates and my GPA was higher than it had ever been! It suddenly
dawned on me that the person who said that was wrong ó my problems were due to
an illness, not an inability to discipline myself or manage my time. It was an
amazing revelation and it helped me give an answer ó mentally at least ó to the
people who doubted me.
Proof of My
That spring, college gave me another
gift ó my Research Methods II class. One of the requirements was to do a major
research project and I thought I might like to do something on CFIDS. It was a
shock when I found out my professor not only knew about CFIDS, but had worked
with persons with CFIDS (PWCs) in his counseling practice!
I ended up doing a project on how CFIDS
affects the education of young adults. It was eye-opening to read about and talk
with other young PWCs. I realized I was not some kind of alien; there were other
normal people who were like me. I even learned about CFIDS Youth Alliance and
became a member.
I started thinking about CFIDS as an
that needed to be studied and learned about so we could understand it and fight
its effects. I did another research project and learned even more about CFIDSís
immune system abnormalities and brain lesions. I couldnít believe this much
proof of my sanity existed. My professor was terrific. He totally encouraged me
and he was familiar enough with CFIDS to help me do these projects well. He even
encouraged me to do an independent study project so I could do more research.
Best of all, he helped me see that having CFIDS can be an asset as well
as a liability. Having it gives me an entryway into understanding it and the
people who have it. Because I know first-hand what this disease is like, it
gives me a unique angle through which I can hopefully help others.
CFIDS has made
college quite a
challenge. I know that most healthy people wouldnít believe some of the things I
have to do to survive. But I have survived with Godís help and lots of support
from my family, friends and professors. I plan to graduate in May 1998 with a
B.A. in psychology and I hope my degree will help me help other YPWCs. Iíve had
to pay a high price for my education, but for me the reward has definitely been
worth the cost.