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Surviving and thriving in college with Chronic Fatigue Syndrome (CFIDS)

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By Andrew Flatgard • www.ProHealth.com • January 1, 1999


So you’re headed for college. Congratulations! If you are like I was, you are apprehensive about coping with the demands.

Sometimes it was exhausting just to think about the activities—class, studying and writing, eating well, rest, errands, and all kinds of relationships. It took me six years to earn the bachelor’s degree in philosophy, but I did it, and now I hope my insights about attending college with CFIDS will be profitable for you.

Getting started

Most colleges and universities have a Learning Center, or a place where individuals with learning difficulties of all types go for information and help. Go to the one on your campus, even if you do not believe you have a learning difficulty. Profound fatigue, in a sense, is a learning difficulty and can interrupt not only class attendance but also the ability to take notes in class. Notetakers, at college expense, can be assigned to take notes for you in a class that you have difficulty with. For instance, if it hurts your eyes and head to follow numbers in math class on the chalkboard and on your paper, a notetaker can take math notes for you as you sit listening. This is just one example.

I went to my university’s Learning Center to ask for help in reading, as I cannot read more than five to 20 pages of text a day and English classes were requiring more than this. I was referred to my local Vocational Rehabilitation office; they bought a computer to read documents for me. They even decided to pay for my tuition and books! What a blessing! And all because I kept options open and went to my Learning Center and asked questions.

Also, if you do struggle with reading, a doctor’s note can qualify you for Recording for the Blind and Dyslexic (RFB&D), an agency in New Jersey that has every book on audio cassette that a student needs in college. And if they do not have the book you need to read, they will record it for you. I would have failed classes if not for RFB&D. Their number is 800/221-4792.

Some universities are advanced in the recognition and accommodation of learning disabilities. I had a harrowing time with my university. I’ve had enormous and sometimes incapacitating pain doing math since the inception of my CFIDS, and I asked to be excused from part of the math requirement or at least to have a substitution offered. I was sent to two hours of testing done by the university to see the extent of my disability. Though the psychometrist and both of my doctors wrote the strongest letters they could in support of accommodation for me, I was denied accommodation. A group of university academicians met privately and rejected my request. I was not allowed to attend the meeting to explain the complexity of CFIDS or my physical pain. I subsequently learned that my university has never altered their math requirement. I was assured that the university did not want me to endure physical pain because of the math requirement, but, alas, their words rang hollow. My university is probably the aberration, as other universities of comparable level have for years altered their requirements when necessary.

Calmly and patiently, fight for your rights. You may be aligned against a wall, but the Department of Justice can be helpful. Acquaint yourself (and your school) with Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act.

More accommodations

Taking care of little things as you begin college will allow you to save energy for the important parts of your life. For example, my fatigue is quite pronounced, so my doctor signed a handicap parking form (available from your local tax assessor’s office or your doctor) to save me from long walks across my hilly campus. I rarely parked in handicap parking, choosing instead to park in faculty spots so that persons with more severe difficulties could have priority. I encourage you to do the same if you secure a handicap-parking permit. This permit would save you much energy, depending upon your campus and condition. It was paramount for me.

In addition, if you need to, place your legs up in a chair while in class if you have venous pooling in your legs. This action saved me from much pain and preserved my energy.

Take a proactive stance toward your education, including class time. Others may wonder why you are getting accommodations, for you may look perfectly fine. Over time, their wonder or questioning of you should dissipate, and it is your right to care for your health. In class, I elevated my legs and wore sunglasses to protect my eyes from painful fluorescent light.

A final practical idea is to fax in your papers or assignments to the department office where a secretary will place your work in your professor’s box. This saved me many tiring trips, for papers often are not due in class but rather by 4 or 5 p.m. on a given day. If you do not have access to a fax machine, try e-mailing assignments. This is a bit trickier to do, though.

Support groups

I hope you might drop in on a CFIDS support group if one is available. They are not for everyone. Personally, it depresses me to hear (and even read) about others’ symptoms because I am reminded of my hardship. But isn’t there usually a person in a large group you can find and maybe have a one-on-one friendship with? Last night, I talked with someone my age who had CFIDS for six years, and I was so comforted and strengthened to hear of his difficulties because the talk helped me to know I am not the only one to struggle with thoughts such as:

¨ I feel so depressed about little things. Am I being too picky?

¨ My emotions feel dulled compared to before I was ill. Where’s my passion?

¨ Sometimes I don’t care about anything. This just isn’t like me.

¨ Will I be attractive to girls if they know how ill I am? Or will I be a bore to them?

¨ I can’t fall asleep; I’m exhausted; now what do I do?

Narrowing your focus

Studies are so important, for college can make you into an excellent writer, speaker and reader. These are life-long skills, wouldn’t you agree? But I believe, the relationships you have in college are just as important as studying. You will develop social skills that will shape you for years to come. For a young man or woman with CFIDS, relationships are paramount because our emotions run ragged: so high are the highs, and so very low are the lows. We need people to remind us that we are loved and that we can make it through the gut-wrenching lows. The lows I am speaking of are both emotional and physical.

For many PWCs, hormones are imbalanced, and good friendships can counter the effects of this imbalance, I believe, by engendering optimism in our thinking and outlook toward the future. You are not alone. And it is our friends who help us realize this, not just with our heads but with our hearts.

Be with your friends as often as you can but not to the detriment of your studies. Here’s my recommendation? A great avenue for socializing is to attend a group on campus that meets regularly. For me, a weekly meeting called Reformed University Fellowship (RUF), which is on about 35 campuses in the United States, was everything to me. The refreshing preaching and loving friendships there made my college experience fun and so joyful. My point is that it was good to have a weekly meeting to anchor me into a routine of being with people.

Emotions

Others may sail past you in class hours completed; you will see many enjoy the outdoors in a way that perhaps you cannot; there will be tremendous frustration when you cannot do what looks so fun. From experience, I know it can hurt to bottle up frustration and anger, for these two emotions, if allowed to take root, will sow seeds of bitterness. The bitterness then can change your personality and, I believe, interfere with progression toward better health. Let the frustration and anger out in appropriate ways. Appropriate ways for me were calling my brother or parents, renting a movie, honest prayers, and going to a friend’s house to just talk about music or girls or whatever would calm me.

Did you know that 50% of all college students now take five years or more to graduate? It makes sense, then, that it might take longer for a PWC. Taking six or seven years to graduate may exasperate you, but keep in mind that taking this long is not a moral indictment of you. There are a lot of years to live, and college can be a splendid time to foster a love of learning and to develop life-long relationships. The extra time allowed me to develop a deep appreciation for poetry, classic films and music.

A panoramic view

Let me encourage you not to consider college as an impediment to where you “really” want to be. There is joy in this journey, and during these years the journey is more important than the destination.

To gain strength and proper perspective for my college journey, I wrote Bible texts on yellow legal pad paper and duct taped the verses to my wall. These texts anchored me in my faith in the Lord Jesus Christ, thus providing a panoramic view of life that gave me purpose and direction. This illness pushes all your limits. Were it not for God and His love, I would certainly be a bitter man. The supreme way I dealt with CFIDS in college was through a growing faith in the goodness and sovereignty of God, as well as trust in God’s grace to provide for me love and strength to cope with this disease. I lived thinking on Jesus—his specialness for Christians heralded in Hebrews 4.14–16.

Seeing then that we have a High Priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. For we do not have a High Priest who cannot sympathize with our weaknesses, but was in all points tempted as we are, yet without sin. Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need.

I trusted in God, and he was there every day and every night, in both the good times and especially the bad times, when CFIDS seemed so daunting and pressing on all sides.

Andrew Flatgard, of Jackson, Miss., will begin seminary in Orlando, Fla., in 1999. You may write him at flatgard@hotmail.com. The Bible verses he posted on his wass are on his web site (http://www.freeyellow.com/members/flatgard).



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