It took four years for me to be given a diagnosis of Chronic Fatigue Syndrome. This is a piece I wrote a few years ago describing what it felt like to live with an undiagnosed condition.
I cried a lot last week. I cried on the tram. At the checkout counter of the local supermarket. At the dentists. Until two years ago I’d never cried in front of another person, but now I regularly expose trams full of Melbourne commuters to my tears.
I can go for weeks without crying at all but last week my emotions were bubbling too close to the surface. The most I could do was to cover my face and try to hide my tears from the curious, grey-suited commuters sitting opposite me. I was crying with overwhelming feelings of sadness, frustration, anger and (worst of all), self pity. The other people on the tram were going to work. I was going to the doctor.
I feel ashamed writing this because you must be thinking that I have a terrible illness and that I’m struggling for my life. The problem is that I don’t know what I have- it’s an undiagnosed medical condition. Possibly an unusual type of chronic fatigue syndrome or a depressive mood disorder. Then again, maybe not. And when you don’t know what you’ve got, you don’t know where it’s leading you, and you don’t know when it will end.
Two years ago, I suddenly stopped sleeping. I was in America studying at a mid-Western university and had just been to a Martin Luther King Day service at the local Baptist church. That night I couldn’t sleep; my brain was agitated and in overdrive, thoughts ran screaming through my head. The next morning as I struggled to get to my classes I thought I must have had a bad reaction to some white wine I’d had to drink the night before.
Unfortunately this wasn’t the case and over the next six months I had debilitating insomnia. I would finish up most nights on the couch in my living room watching terrible American early morning programs in a desperate effort to get back to sleep.
I was so frustrated and confused about what was happening to me and resented friend’s suggestions that I should get counselling or just try to relax. “I am relaxed,” I would say through clenched teeth, “I just can’t sleep!”
I returned home to Australia and started to feel not only exhausted and lethargic but a strange heavy, foggy feeling inside my head. I find it hard to explain what this feels like but cast your mind back to the worst hang-over you’ve ever experienced. Now, on top of this, imagine that someone had wrapped two bricks inside a doona and stuffed them inside your head. The muscles around your eyes ache, your head is heavy and pounding and it hurts to keep your eyes open. Top this up with a dose of exhaustion and you’ve got a pretty good idea of what it feels like to live inside my body!
I expend most of my energy going to doctor and being put on round after round of anti-depressant medication. “But I’m not depressed,” I say “I’m just so tired and I can’t do anything.” “But you’re crying,” say the doctors, “you must be depressed.” The doctors argue that my depression causes fatigue and I argue the opposite- that my fatigue causes depression. They’re caring but patronising, and I long for someone to take me seriously. I want to scream at them “I’m not an idiot! I’m smart and motivated! You didn’t know me before I got sick- I was a ’somebody’ then!’
Friends and family who can work, or read or go for a hit of tennis tell me that I’ll be better soon, that one day this will be just a memory. They say, “You won’t sleep if you worry about it- just stop worrying.” Or, “what you need to do is to try and go to work, then you’ll be so exhausted you’ll sleep.” Walking along the beach with me one day my father looked out at some fisherman fishing off the jetty. “That’s what you need to do,” he said, “some fishing. It’d be really relaxing for you.” “But dad,” I protested, “I’m a vegetarian!” Unfazed, he replied, “that doesn’t matter, just fish without the hook.”
I go to alternative health practitioners who tell me I have a small problem and that I’ll be better in about five days if I take the herb they recommend. Many, many ‘five day’s and thousands of dollars later it becomes easy to be cynical about sudden cures. I have to try and find the balance between hoping that something will work but feeling crushed by disappointment when it doesn’t, and being so bitter and cynical about treatments that I don’t open myself up to trying them.
I try to stay positive and not doubt myself, but I long to meet someone else who experiences the physical symptoms that I do. I want to have a name for what I have so I can find out about other people who have it. I want to feel like I have a ‘real’ illness and that I’m not just making all of this up in some bizarre subconscious effort to get attention or to be able to drop out of life.
It’s become easier to sink into depression over the last few months. I always thought of grief as something you feel when someone dies, but I’m not grieving the loss of another person, I’m in grief for the life I’ve lost and the vital energetic person I used to be.
I used to be so active. I had so many plans for my life. I wanted every task finished ten minutes before I started it. In my 21st birthday speech my best friend joked that I would be reading a book, brushing my teeth, and practicing piano simultaneously in order to make maximum use of my time. To help me cope with hours of enforced rest and two years out of the work force I have to rethink this way of life. This is a difficult thing to do because these patterns of activity and achievement are part of my philosophy of life. I think that time spent relaxing is wasted time. It’s really difficult to see that, for me, spending time not achieving is an achievement in itself.
As hard as this process is, there are certainly rewards. I now think less and feel more. I’m less likely to make harsh judgements about other people and more likely to feel empathy for their problems. I try to ask people how they feel rather than telling them how I think they feel. I appreciate the beauty of the Fitzroy Oval against the backdrop of the city lights as I walk around the oval at sunset. I lie on the floor of my living room and do nothing but listen to the sounds of the birds outside and the voices of people walking by.
I treasure these moments of peace and acceptance because they are rare and hard won. The uncertainly and self-doubt of living with my un-named illness never really leaves me and for the first time in fifteen years I pray to the blurry, half-formed concept of God that I left behind with Sr Margaret-Mary in Year 8 religious education class. I pray for faith and acceptance. For humility and patience. But most of all I pray, in a very childish way, that God will make me better.
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