School and kids with CFS

In this society education is important for everyone's future, from a basic understanding of the world, to career prospects. Schooling is also valuable for children because they are given the chance to relate to their peers and teachers. Learning gives young people an interest, a sense of achievement and a purpose.

Complications arise when because of health reasons, kids are unable to attend school and/or complete work in the same way as a normal healthy child. I have struggled with Chronic Fatigue Syndrome (CFS) since I was 10 years old, and have tried to attend and complete classes since. From trial and error, and with help from my parents and others, I have learnt a great deal. I have learnt information from the school curriculum, but I have also learnt about society, politics, and people, and by the time I attended college (years 11 and 12) I had learnt how to minimise the stress and difficulties that occur when trying to attend school while living with a chronic illness.

The most important advice I can give to kids with CFS is to be dedicated and diplomatic, and that applies to parents too. Kids: if you want to have an education, you have to show your teachers that you are serious. That means asking for work on the days you've missed, turning up to all your classes (unless you are unwell) and behaving in class. You need to respect your teachers and earn their trust. Because you have CFS, you are not an ordinary student and you are asking to be treated with special consideration. Many kids wag school and don't care about their studies and if you are one of those kids it will be hard for teachers to believe you are genuinely ill. Teachers work hard, often marking student's work until late at night and on weekends. They also face many students trying to get out of work or get an extension to an assignment, purely because they are lazy and/or don't want to work.

There is a cloud that is lifting in society in general over whether CFS is a real disease or not. You, as a student, need to make sure you don't give your teacher any reason to believe you are faking. But more than that, teachers work hard and you are asking them to spend extra time on you. This is where there is a need for diplomacy and persistence. 'The system' doesn't easily accommodate people outside the box, or the norm.

For your school to understand absences and acknowledge your illness you will need to have a supportive doctor. A supportive doctor will not only write doctors certificates saying you have Chronic Fatigue Syndrome, but also include on those certificates an explanation of symptoms, what allowances you might need and problems which might arise (such as periods away from school). Also, your doctor will need to advise your school on different strategies at different stages of the illness. A supportive, accepting doctor is essential for any CFS sufferer, and essential for a child to be able to successfully complete their schooling.

The following are strategies that worked for me in Primary School, High School (7-10) and College (11-12), each building upon the other.

Primary School

In primary school, my parents arranged with the school for me to tell my teacher when I was tired and leave class to rest in the library. All I needed was a note to get extensions for assignments. At the time, I saw a doctor who recommended I increase my exercise (which I now believe was the wrong advice) and therefore I still participated in Physical Education (P.E.), and took a note from home on those days I was particularly ill and could not do PE

Parents need to take the lead for Primary school children, petition their cause, give them support at home and encourage them to spend time with their friends. It is important for children to have some sort of social interaction. The best thing the kids can do is quite plainly, be good in class. However from what I can gather in most cases this isn't a problem, because kids with CFS are too tired and/or unwell to play up in class. They find it easier to be compliant and do the work asked of them.

High School

My health improved for years 7 and 8 so, while I felt tired constantly and had to rest a little more than my peers, I led a normal active life. In year 9 my health declined again and I was unable to attend school. My teachers and finally the distance education coordinator sent schoolwork home, but even though I tried, it became clear I could not do any schoolwork.

If you are housebound it is important to try to do distance education and work from home without overextending yourself. This will keep your mind busy and give you a sense of achievement with each piece of work you complete. Distance education will help you to continue schooling when you are able. It will decrease the chances of you having to repeat a year and lessen gaps in your general knowledge. No matter how much time you've had off, working from home will make it easier to catch up when you return to school.

When you have been away from the school environment it can be quite daunting to return and gradual steps make this easier. I found the transition smoother because I kept in touch by phone with a couple of school friends, so I knew what to expect when I returned. For the record, school really doesn't change and from a social and managing aspect it was very simple to slot back in to school life.

From a health aspect, don't return to school until you feel you can handle it. And return at the rate you can manage, even if that is only one or two subjects. In some cases only a portion of a subject course will be enough, perhaps learning, but not doing any assessable items. Of course this depends on your condition. Don't jump in head first to a full load, because most likely it will be detrimental for you health, your schooling and your confidence. Push yourself too much, too soon and you will consequently be set back. Having said that, if you do find you are doing too much, too many hours, too much homework or you find the work too difficult, this will be reflected in your symptoms such as tiredness or pain level. Do not hesitate to drop subjects or, if you are only doing one subject, to stop attending school. It is not a failure, you just weren't ready. You can always pick up those subjects when your health improves and you feel ready. Put your health first.

Strategies
My teacher had an idea that truly helped when I was doing 3 subjects in year 10 and I carried it through to year 12. She recommended I do unfinished classwork, homework and assignments at school if I could, with regular rests. This means you can do school work without distractions such as family, TV etc. This also means that when you are at home you don't have to worry about school. Home will become a place where you can wind down, relax and rest without the pressure of having to do more school work hanging over you.

Another point she made was that a change of subject can be as good as a rest. So when you are doing school work (out of class), alternate work on different subjects to help your concentration. I would tend to rotate, for example Maths homework, an English assignment and resting. Don't try to do big slabs of work in one go, it's best if you do what you can handle, which might only be 10 minutes on each subject. The time you can spend between resting will depend on (be dictated by) your personal health/stamina.

This also applies when deciding on your workload and how many subjects you do. If you are able, it is preferable to do 2 or more subjects, so you are not completely consumed by for example maths, and particular problems you may be having with the maths work or the teacher at that time. Again, you will get some relief from maths while you are in another class or doing homework for another subject. If you can, organize to be excused from less important assessment items for subjects, so you can do more than one subject. I found this beneficial. Basically, if you do more than one subject and you rotate work from each subject and resting, it will mean that you will be less stressed and one subject (in effect all school work) will not become a mountain.

For your future education's sake, start with core subjects: Maths, Science and English and Social Education (History and Geography). This will give you the basics for future study and life. However, your doctor may recommend you do an elective of a subject you enjoy, again to take the pressure off and keep you motivated towards study.

In particular, if you are doing more than one subject it is important to tailor your timetable as much as possible to your needs. For example, I was stuck with a timetable that meant on Fridays I had one subject first in the morning and then another last in the afternoon. Because I lived out of Canberra this meant I had to stay at school all day and even though I had a room to rest in, it took a toll on my body. This may also be a problem if you have to catch a bus both ways and you find bus rides tiring. The day might take too much out of you. You may also find it difficult to concentrate for two whole subjects in a row without a break (basically 2 hours). Therefore it would be beneficial to organize your timetable so you do one subject and then you have a period off before you do the next. For some people just to have recess (to either rest or chat to your friends) in between classes will be enough. The social aspect of school is also very important. It's important you get a chance to see your friends, to talk to people and have some support and this should also be factored in when deciding your timetable. Of course, your timetable will largely come down to your choice of subject and the school's timetable.

Because for a few years I was only doing 2-3 subjects, my father drove me to school and back. This reduced the toll that school took on my body a great deal and had I not had his help, schooling would have been much more difficult. If it is not possible for a parent to drive you, and school or bus rides are too much, distance schooling is always an option. Talking your situation through with a teacher (for me my counsellor) will give you ideas on solutions.

Finding an advocate
I recommend from high school age finding a teacher to further/petition/represent your cause. In my case I had a very helpful counsellor who came up with many of the ideas for the logistics of managing school. The person you choose needs to be sympathetic to your situation and willing to push forward your case and put pressure on other teachers if necessary. For this reason it is best to pick a teacher who has some power. Some suggestions are, your counsellor, year co-ordinator, special needs teacher, or a subject head you have already found helpful. As a rule I wouldn't suggest the principal or deputy principal because most are so busy they won't have the time to help you. Again, you need to work in co-operation with your teachers, basically all your teachers will have to spend extra time on you, and do extra work for you. Because you are not the usual student, they will have to explain their actions in regards to you, to other teachers. Don't abuse the leniency and the trust they give you, as they are under no obligation to make things easy for you.

In High School, if you have a helpful teacher they will talk to other teachers for you (both those listed and your subject teachers), but particularly in College it is important that all the relevant teachers are informed and consulted about your situation.

My counsellor spoke to all my subject teachers about my condition and she also sent them a letter explaining that I might need extensions for work and longer time for tests. She also sent some pamphlets about Chronic Fatigue Syndrome to them. When I went to class, my teachers talked to me and got to know me, so they knew I was serious about learning. This helped as they now had some knowledge of CFS and of my specific condition. When I did need extensions, I found my teachers very reasonable and understanding.

Accommodations
There are many aids you can ask for. You can ask for extensions for assignments and homework, and you can ask for extra time for tests and in class assessment pieces, without losing marks. For instance, I sat a test over three half hour sessions on different days, instead of sitting it in one, hour lesson. If there is a large amount of homework, you may be able to organize with your teacher to do only the most important homework. If this does happen make sure you are not penalized for not handing it in. My science teacher penalized me this way once, so while I received 80% for everything I handed in, he gave me a C.

Both in High School and in College I asked for a room where I could lie down in and rest any time I was not well. This was a quiet, rarely used room in the school. Both in High School and in College I had to ask for a key each time to open the room, and I was rarely disturbed. Ideally you would have a room for yourself, but in most schools this is not possible. Occasionally I had to leave the room because another class wanted to use it. There was a desk in the room, so I often alternated resting with some schoolwork (this was quieter than the library, and I could immediately lie down if I needed to). I bought a beanbag I could lie down on and took my Walkman to school so I had some music to listen to when I was resting. This is better than the sickbay because firstly, sickbays are noisy with people walking in and walking past all the time, and secondly, it is not helpful to be around sick people every day for someone with CFS.

One of my worries about returning to school was that mid-class I would get extremely tired, or be in pain and that the teacher would not let me out of the room. My counsellor said that it shouldn't be a problem with my teachers because she would talk to them. However I was still worried about relief teachers who knew nothing about my situation. My counsellor gave me a card, basically saying that I had Chronic Fatigue Syndrome and that I could leave the class at any time without reason. It had her signature and name down the bottom of the card. I also arranged for one of the teachers in college to give me a similar note. Although I never used the card, I believe it is a great idea, because if you are feeling unwell you do not want to be trying to convince your teacher of that, especially a relief teacher who is likely to think you are lying. Do not abuse this privilege.

I would like to stress the following points. Don't tell other kids you have your room because they are likely to want to go in with you and talk when you need to rest (the teachers therefore may not believe you need it for resting if they find other kids in your room). It's better to join your friends on your terms, in the playground at lunchtime, or recess or before or after school.

Don't tell and especially don't show off to your friends that you get extensions or may not have to do a piece of work. If you do, they may challenge your position and ask why you get an extension and they don't. They could also challenge your grade etc and make life difficult. In this respect it is better to be discrete. The same applies with your note to get out of class. Kids rarely understand this illness and won't want you to have an advantage over them, whether it means getting out of class or getting out of doing homework. If students do challenge your special case, it will be harder for the teachers to cater for your illness. It is a lot easier and causes fewer problems to have a blanket rule for everyone.

There are people in society who do not believe that CFS is real and this also applies to teachers. In year 11, I approached my maths teacher after my first lesson to talk to him about my situation and to explain that I would need extra time for assignments etc. As soon as I said I had CFS he replied sarcastically "Oh everyone seems to be coming down with that", implying that I was faking and I did not have a real illness. This took me back a step. He begrudgingly said "Yeah OK" to my other requests and abruptly left. There were many other maths classes running in my school so I just changed classes. In the end people like that will just cause problems for you so my advice is to avoid them, if possible.

It may be difficult to organize these concessions and ultimately you will have to work around the schools facilities and rules but it is important to organize it, for the best impact on your health, your education, and your social and psychological well being.

College

When it comes to College (years 11 and 12), you are old enough to take your studies largely into your own hands. Your teachers will expect you to come to them and explain your situation rather than, or as well as, hearing it from your parents or another teacher. As much as most young people may not want to spend time talking to teachers, it is important to talk to them about your situation, your options and to make general chit chat/small talk. You need to give your teachers respect and not treat them as the enemy. If possible try to be kind, sincere and likeable. As I said, it is advisable to approach teachers yourself. This includes finding a teacher to represent you as well as informing other appropriate teachers of your situation: your subject teachers; counsellor; special needs teacher; year coordinator; student programs (the teachers who organize timetables) and school and careers advisor (who will help you work out a plan to complete your Year 12 Certificate, and/or do the HSC and tell you which prerequisite courses you will need if you choose to go to university). There may be other teachers you feel need to be informed. You need to be comfortable in fighting for yourself and telling your story.

You will meet other teachers on the way, and as I've said before, it doesn't hurt to get them on side. For me, when I had a particular requirement, I found out that the teachers had discussed me, and the problem, in the staff room before they came to a decision. One of my subject teachers was able to stand up and support my case because she knew me in class to be a good student. I had previously informed other teachers so no teachers were taken by surprise, or were suspicious of my sincerity. This helped my situation.

However, you may come across teachers who do not respect you as an adult and do not wish to help you. In this instance, you can tell your representative teacher and in most cases they will talk your teacher around. If that does not work or your representative teacher is not helpful, bring your parents in to talk to them. If that doesn't work, arrange a meeting with you, your parents and the principal to talk about your schooling.

As with a normal child or adult, balance is very important for physical and psychological well-being. You need to have a balance between exercise (walking around the corridors at school may be enough), school and mental stimulation, pleasure (whether it is playing a musical instrument, watching TV or playing on the computer), spending time with your family and spending time with friends. Having CFS can be a very isolating disease. As well as the losses incurred when you lose an active life, many children lose friends as well. It is hard particularly for kids to understand CFS, especially when the lifestyle is to stay up all night. Parents and doctors should encourage kids to spend time with their friends, in and out of school.

If you aren't able to go out of the house much, letters and emails can help you keep in touch. I found talking on the phone was useful because I could talk to my friends without getting as tired as when I saw them in person. But remember to pace yourself and when you begin to feel tired end the phone call. If your friends don't understand that you have to go because you do not feel well, you can always say your parents need to use the phone. When writing and reading letters, don't feel obliged to finish them in one go, read or write little bits at a time and you won't feel as tired.

Because of the symptoms you suffer due to your condition (such as reduced concentration) and/or if you have missed school, you may not be able to handle the level of work you previously achieved. This may mean making an adjustment to lower standards by accepting lower test scores and marks. It may even mean doing a less advanced level of schoolwork. This is unfortunate, but your health must come first and hopefully as you build up your reserves you will be able to take on more.

In class, sometimes I was well enough to attend, but not work. On these days I listened to the teacher and kept a low profile. Sometimes my concentration ran out part way through class, so I would just sit quietly until I felt a bit better. Then I'd resume my classwork, or wait until the class ended. Because my teachers had some understanding of the illness and because I kept a low profile and wasn't disruptive no eyebrows were raised.

From years nine and ten upwards it is important to be diligent with your studies, even if other kids aren't. Don't be slack and not do homework because you don't want to. If you are away make sure you approach your teachers and get the work you missed. This will prevent you from falling further behind.

Conclusion

Despite all your efforts to be diplomatic and likeable, you are likely to face obstacles during your education and some may be difficult to overcome. Some teachers may treat you unfairly, lower your grade because you have not completed all items, or may not be very lenient. Unfortunately, this is within their rights because they have a set of rules that apply to all students, and they may expect you to abide by those rules even though they may not be realistic for you in your condition. I recommend approaching other teachers who have been helpful and asking them to petition your case, but if they won't or can't make any ground there is little you can do, unless you are outwardly being discriminated against. Most teachers will be helpful and sympathetic as long as you take a mature attitude to your studies. Of course the more CFS is recognized as a valid illness by society the easier schooling for young people with CFS will be.

With hard work and determination it is possible to continue school and do well while living with CFS and in doing so, to gain a feeling of achievement knowing that you have succeeded at schooling despite obstacles you have had to face.

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