The Road That Was Taken:   Going to 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 many times over the years in one form or another. Sometimes I ask myself how I’ve been able to get through college even though I have chronic fatigue and immune dysfunction syndrome (CFIDS). There are times when I feel I’m being unrealistic and other times when I’m so busy trying to survive that I can’t 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 college.

Different Challenges and Rewards

Being sick in college, I discovered, had 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 didn’t 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 didn’t 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 — and no incompletes!

A Tough Time

However, the next semester marked the start 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 trying to finish the four incompletes, plus take three new classes — the bare minimum required to be a full-time student.

I had five infections that semester on top 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 wasn’t trying to take advantage of them. But there were other people who stopped understanding. I didn’t 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 don’t 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 Off?

A lot of people have asked me: "Why don’t you take some time off or maybe go to school part time or something?" Some of the reasons I haven’t 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. It’s impossible to say how I’m going to be doing in a couple of days, a week or even an hour, so sometimes what I’ve thought of as a major crash is gone by the next day.

There were other more intangible reasons as 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 101°. If I didn’t, he wouldn’t 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 16–20 credits, do sports and extracurricular activities and didn’t 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 Problems

The following semester again brought a lot of infections and I became even more aware that I looked like someone who couldn’t 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 wouldn’t think I was trying to look or act sick to get attention.

I also began to develop techniques for getting around the reading problems. I don’t know if I actually changed anyone’s 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 can’t 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 — my highest yet! That was a startling epiphany for me. I had been told that my grades wouldn’t be as high if I didn’t 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 — 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 — mentally at least — to the people who doubted me.

Proof of My Sanity

That spring, college gave me another great gift — 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 entity 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 CFIDS’s immune system abnormalities and brain lesions. I couldn’t 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 wouldn’t believe some of the things I have to do to survive. But I have survived with God’s 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. I’ve had to pay a high price for my education, but for me the reward has definitely been worth the cost.