This is an unedited extract from my upcoming book 'The Power within ME'

My life with Chronic Fatigue Syndrome began when I was 14 and a half. I was a normal teenager up until then.

I loved sleepovers with my friends, taking all sorts of dance classes, hanging out at the mall and giggling with my friends, eyeing off cute guys, trying to manage top marks and was the eager to please child. I was the fairly stereotypical teenage girl, blonde hair, hazel eyes- and glasses.

After a stressful week at school, I had my polio vaccination, which was routine for year 9 students. Two days later, after a friend’s birthday sleepover, I developed the flu- that never went away. Weeks followed filled with tears, frustration, visits to doctors, blood tests, kidney tests, and liver tests, tests for glandular fever, tests for everything you could think of. I don’t remember much about that time, except a big blur of wanting to be well, yet wanting a reason for why I was feeling so sick.

I went through a lot of doubts at this time, I knew I couldn’t possibly be making it up, yet there was a part of me that told me I must be crazy as nothing was showing up on the tests.

Finally, when I almost thought life couldn’t get any worse, we asked our doctor if Chronic Fatigue Syndrome was a possibility.  

The doctor didn’t know much about the disease and didn’t feel right about giving me a definitive diagnosis, which I guess in some ways I can understand- there was always a query about whether I had CFS. But another part of me felt like she didn’t believe me and just thought my mother was one of those over-protective ‘oh my darling daughter has a scratch I’ll rush her to the doctor’ type of people, which anyone who knows her can tell you she isn’t. We found out about the University of Newcastle group and did a urine test with the Bioscreen group there, but the doctor admitted she did not know how to interpret the results. As soon as we’d taken this step, yet again I felt lost. Was I supposed to feel happy that I had a name for why I was so sick? Or was I supposed to feel upset because I had this terrible illness? I felt so weird; I couldn’t work out what I was supposed to be feeling. Meanwhile I had missed a ton of schoolwork, which worried me.

I suppose the biggest thing I had to cope with was the mold I had fitted into. My life had changed. I was always known as Sacha the perfectionist, straight ‘A’ girl, who loved to dance. Now I had to let go of being a perfectionist and let go of my grades and let go of everything that I felt defined me as a person, I wasn’t able to do the things I wanted to like audition for dancing when the Olympic Flame came to my hometown, or deciding to play netball. Instead I became known as ‘Sacha who is sick and looks well and we don’t know why, so she must be faking it’. I guess my friends at first had a right not to understand, all they could see was I, not being there a lot, and when I was, well I guess I wasn’t my usual self, or maybe that was the problem. Maybe I tried too hard to be happy and that’s what made them think I was faking it. Most teenagers go through a process of finding themselves in these years, I didn’t, and I feel as if I’ve lost me, my personality and where I fit into the world.

I sent a letter to my five closest friends explaining to them what Chronic Fatigue was. I mentioned how I still continued my dance classes as this was something I loved and was willing to feel awful after doing it.

I was scared, and still am scared that I, not being around as much in my friend’s lives, would gradually be erased all together. I got scared that they’d forget me, they’d stop ringing, remembering my birthday. In some ways they have, but in others I feel closer than ever to them. I also began to feel like I’d moved apart from them, they worried about guys and the arrogant girls at school, and while I did a little too, I was more concerned with things like, how to get through each day, wars and even the meaning of life. They used to joke about things with sexual references and I would sit there thinking how inane it all was.

They weren’t in the wrong, that’s just what teenagers do. It was me, I felt so out of place and I wanted so much to be like them to think that all that stuff was funny, but it just seemed stupid.

My parents had meetings with my pastoral (or roll call) teacher, who explained to the class what had happened to me, and gathered some schoolwork for me. Most weeks I attended 1-2 days, where I went home at lunchtime so I could sleep or do homework so I could get an early night. At this stage I still spent a lot of time in bed, or on the floor in front of the heater wrapped in a doona and my pajamas. Looking back, I don’t know how I survived really. I was very depressed, crying a lot, having many talks with my mum and dad and barely making it through each day.

Schoolwork went down the drain as I was too sick to catch up and the teachers weren’t that forthcoming with work for me.  1999 soon ended with a resolution that I’d get better in the New Year. The Christmas break was more a bother than a help; it just seemed to remind me of all the activities I couldn’t participate in.  

My Year 2000 pastoral teacher was a favorite of my school; she was always ready for a laugh and is someone who all the kids seemed to get along with.

This year my parents were convinced we were going to start the year off properly. So went straight to my pastoral teacher and told her my situation and wrote notices and letters to all my teachers explaining my situation and that I would need help obtaining class notes, and keeping up with school work.

All I can see looking back at my time in ‘normal’ school was the endless struggle it was to get assistance from teachers. I was enrolled in a Catholic school where my brother before me had completed his HSC in 1999, my parents chose the school because of the pastoral care system it had in place, and I chose the school because my brother was there.

The school was good, up until I got CFS; I was a model student, always in my proper uniform, always getting good grades. But suddenly they needed to help me, they needed to get syllabuses for me, they needed to photocopy notes, and then it became all too hard for them.

There were a couple of my teachers who went out of their way to assist me by giving me class notes, one even dropped units to my father’s office for me. But most of the teachers failed to notice I was there. Whenever I was sick for a few days, I’d get back and find I had to photocopy or copy out tons of notes, catch up on heaps of assignments, and I felt like I’d never been away. So then I get sick again from staying up late and pushing myself to catch up on notes, only to come down and have to spend more days in bed. It was a vicious cycle, which I couldn’t seem to get out of, no matter how many interviews we had with the school, or how many phone calls by my parents asking for help from the teachers.

 In August 2000, I came to the realization that I had had Chronic Fatigue Syndrome for one year. I felt so shocked. This dreaded disease had taken over one year of my life? This made me decide within myself that I was going to be over this disease by the time I turned eighteen. I don’t care how much effort it takes me, but after I turn 18, I can see you sitting there looking at me going ‘you can’t just turn this disease on and off like that’, but this is my new goal for the future.

When I was little I always had my grand plan in my head. I’d do my 13 years of schooling, including the fun stuff like formals, the Yr. 12 jumpers, the graduation ceremonies, everything special, and now I have to think that it’s just not practical. If I want to do well in my HSC I have to do correspondence, although I don’t want to miss out. I can’t be going to school sick, missing out on assessment tasks, it’s not worth putting my education at risk for a few measly things like formals.

My final year of compulsory schooling ended with the news of a move to Melbourne, for my family and me. Although you would think this would make my life harder, I coped by ignoring it. Sure I was moving away, but I never cried, never got upset, and I think that’s why my CFS didn’t play up much, because I ignored it as well. Moving to Melbourne meant doing correspondence for my final two years of school; it also meant the trauma of the last six months bearing down on me.

I am scared now that when I get better, I might not know what it feels like. I think I have forgotten what normal is.

The Internet has been a major lifeline for me during my time with CFS; I have two main groups, one being a message board group and one being a chat group that I turn to a lot. The people on these groups have an understanding of my disease and me and are always ready to help with problems or experiences. We try to get together every now and then and we’re always full of laughs. These people are also CFS sufferers.

When I moved to Melbourne, I joined my local support group and although many of the members are older, I enjoy the group because I don’t have to pretend to be well and push myself. If I need to take time out then I can easily, without feeling guilty. We meet once a month and have sessions on things such as grief and loss, and healthy juicing. We always have a lot of fun together.

After a few visits to various doctors in Melbourne, I found one, who I can really put my trust in. He helped my parents understand my disease, and includes me by talking to me. He has confirmed my diagnosis (18 months after I had the first symptoms) and started me on a treatment regime, which will hopefully lead to a speedier recovery.

For the first term of 2001, in which I was studying YR 11. I did my schooluing by correspondence. I found this wonderful as I could work at my pace, and ring the teachers for support.

But then my illness was putting more strain on me, so I had to quit school, and now I’m facing a further battle in my life, this new found crises of what I feel is a worthless life. I volunteer with children at a community house, and that’s my outing for a week, other than doctors appointments, psychiatrist appointments etc. I'm lucky to have a boyfriend who tries his best to understand my limits and is very accommodating.

I recently got awarded a disability parking permit and the disability pension. Both which have made my life a lot easier. However on Good Friday 2002 a lady abused my sick friend and I for using the permit in a theatre car park. This upset me, but only in inspired me to get the word out on CFS- so I'm trying to get the word out into the media as much as possible. And Please help me out by buying a blue ribbon on May 12th!

 I get very scared sometimes of what I want to be after my dreams shatter into a thousand pieces. But then I look at what I've learnt by having this disease- and I wouldn't change that or the world.

Copyright 2002 Sacha Harris.

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