Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Not easy, maybe, but not always impossible for those of us with CFS.

While this short compendium of school-related articles is a little too late to be a "back to school" issue, I recently came across some articles written by and about students with CFIDS, as well as a lengthy article on the learning and other problems afflicting kids with CFIDS that I thought were important to share.

As some of you know, I moved up to Sonoma County in 1993 to go back to school. I was accepted into the Master's program in the School of Education at Sonoma State. I earned my B.A. in 1976 and, while I had taken some extension courses through UCLA and the University of Alaska during the early 1990s, I knew that carrying even half a load was going to be very difficult. But I had nothing else going on in my life, other than my brain and body vieing with one another to see who could devastate me the most, and I looked at it as a sort of vocational rehabilitation, knowing there was no way I'd be able to return to any of my previous vocations and avocations (systems designer and administrator in third-party health claims, and wildlife rehabilitation/behavioral observation). So, following some other interests (environment, learning, and working with kids), I ended up in the Curriculum, Teaching & Learning program, the only one open to me due to my not actually being a teacher.

I took only two classes a semester. Since they were master's courses, they met in the late afternoon or evenings, generally twice a week, for about two and a half hours each meeting. (I took a couple of lower classes, one that met three mornings a week for an hour, and one that met three afternoons a week, for two hours). The late start times gave me the opportunity to do as much reading and re-reading as I could in the morning and early afternoon hours, with an hour or so to nap or just veg out before leaving for school. I planned no activities for the days before and after the class meeting days. Which basically meant that I didn't do much of anything, as classes met Mondays and Wednesdays or Tuesdays and Thursdays.

I was upfront with my professors, telling them about my wobbly health, cognitive deficits, difficulty thinking on my feet, as it were, in terms of being called on without first volunteering to answer questions or make comments in class. I was fortunate in that, in the master's classes in Education, there were few classes that actually required test-taking. Most work was written: papers, reports, developing projects, etc. The only class in which there was a mid-term and final exam offered them as take-home, open-book tests. This class happened to be the easiest of the two required research methodology classes. In the more difficult one, I found out (when it came time to write the mid-term research paper) that my handwriting had deteriorated so badly that I could not read my notes! That prompted me to get a laptop computer to use in class to take notes - and to sit in places other than at my desk to do note-taking and writing while at home. I continued to use the laptop throughout the rest of my time in school.

Having myself worked grueling 40-60 hour weeks and taken a class every so often when I was healthy, I continually marveled at my classmates, themselves full-time teachers and school administrators who juggled their work with family and the heavy reading demands of the master's program. So I frequently felt inadequate, like I wasn't doing very much, which in fact I wasn't, it being just about all I could do to get through the weekly reading material and try to remember enough to not sound like a complete idiot when I opened my mouth in class!

I did learn some tricks to working the system, as it were:

Besides using the laptop and managing the rest of my life around the demands of the coursework and going to class, I got a disabled parking permit from the Department of Motor Vehicles which enabled me to park as close as possible to the buildings where my classes were. Not having to hike across parking lots, and taking the elevators up to 2-3 floors to classes meant that I arrived in class as fresh and strong as possible.

I let my professors know that I was usually in pain and that I would need to get up and stretch or walk around a bit during class. To reduce the distraction (and keep me close to an electrical outlet in case my laptop batteries failed), I sat in the back or on one side of the class seating whenever possible.

In college more so than in the lower grades, professors always tell you how much of your grade comes from your attendance and class participation as well as your grasp of the course work and completing class assignments. I figured if I could drag myself to class and at least look attentive, and say one cogent thing per class meeting, that I would nail the attendance and participation percentages, which ranged as high as 30% of the grade. I missed only one class meeting per semester, and somehow managed to contribute something relevant to the discussions on the days I was there.

I am terribly allergic to photocopy toner, NCR paper and carbon paper...which made it rather difficult to deal with all the photocopied material distributed in classes, especially those professors who created giant "readers", books several hundred pages long of photocopied journal articles. After developing lingering bronchitis every time I tried to read, I found that Costco had a sale on boxes of page protectors. After buying 700 or so of them, I tore apart the readers and bagged all handouts and material in page protectors and booked them in notebooks. In classes where the professor didn't hand out a syllabus that detailed when each article was to be read, I asked for advance notice of which ones were coming up so that I could bring the reader in from the garage and pull out and book the upcoming articles.

Fortunately, the courses were mostly pretty interesting, and as long as I could take some short mental rest breaks (shhhh! which sometimes included playing a game of Solitaire or Jezzball on the laptop!) along with some physical ones, and nibble on fruit and protein during class, I did all right. In fact, it was pretty weird. Always a rather indifferent student, grade-wise, throughout elementary, middle and high school (my undergraduate work was done at a school that did not assign grades), I was blown away by getting straight A's in my master's classes (okay, so I did get one B+, but when my thesis committee saw that and asked who gave me that grade, they collectively groaned and shook their heads, believing [as I did] that it should have been an A as well).

So how did this all work out with my applying for Social Security Disability in 1997? That worried me more than it did my claims representative, Dan McCaskell, who was more concerned with the fact that I was working for two hours a week. Dan's belief on the issue of school was borne out by the judge's comments. While he initially found the fact that I went back to school, into a master's program, to be of concern, the fact that it took me five years to complete it, including two years to get my thesis done, helped convince him that I was having the problems I claimed to have (which was backed up by medical and neuropsychological testing). (My work is also not a problem as I work just a few hours for a friend who is far more accommodating to my health and memory problems and flashes of incredible stupidity than any other employer would be!)

For students of all ages, the Americans with Disabilities Act offers protection and assistance to getting schooled. Unfortunately, some school districts, and disability resource counselors at some schools, are less than current on their law and how far they are required to offer support and accommodation. (I did not take one class I was interested in because the professor refused to accept papers in addition to the required tests, stating that with 500 students, he didn't want any extra work to do. Had I absolutely needed that class, I would have made an issue of it with him, the DRC and the school. So if a teacher isn't willing to accommodate, don't give up, but do try to see the light, as it were…). Services and accommodations include: meeting in rooms where fumes do not make the student ill; extended test taking time; extra credit work; an amaneusis to take notes; taping lectures both on days the student is in class and on days when they are forced by illness to be absent; close-in parking; and more.

For more information on youth with CFIDS, the CFIDS Association of America and Massachusetts CFIDS Association have educational issues packets available.

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