Rosina Ellis was just 20 years old when a bout of Glandular Fever triggered symptoms of Chronic Fatigue Syndrome. Two years of tests and another ten months of psychological therapy later, she now lives a happy life while managing her symptoms. But suffering from something the medical community has only acknowledged as a physical illness in recent decades is no walk in the park when a lot of people still consider it as just a severe form of laziness.
“I don’t know what to tell you anymore. We’ve run every possible test we could think of and I don’t know what else I can try. I have no idea what it is that you have.”
These are the last words anybody would want to hear their doctor say.
It was an April morning. The sun was shining, the birds were chirping; it was miserable. Faint coughs intruded from down the hall and there I was, in my GP’s office. There he was, wearing a most regretful smile, his gentle eyes, his whitest shirt and the cleanest smell. It was a familiar office.
For 18 months, I have been coming here, sitting in the same tattered chair and eyeing the same tattered medical dictionaries. Nothing had changed during that time; nothing whatsoever. Not the chair, nor the books, not the doctor, or even my symptoms.
Chronic Fatigue Syndrome, otherwise known by the unpronounceable name of Myalgic Encephalomyelitis (ME/CFS), is a widely misunderstood, life-changing and potentially everlasting illness.
The Center for Disease Control and Prevention defines ME/CFS as “a debilitating and complex disorder characterized by intense fatigue that is not improved by bed rest and that may be worsened by physical activity or mental exertion.”
Other than extreme fatigue, symptoms include headaches, unrefreshing sleep, muscle pains and swollen nymph nodes, to name a few. There is no test and there is no cure, just the satisfaction of having a broad umbrella-like label that could be one of many viruses that we don’t understand.
Yeah, it’s a hoot.
It’s not all bad though because with the right support, the acceptance that your life has changed and a little bit of stubborn oomph, a patient can return to living a relatively normal life. And although there is no solid statistic of a recovery rate, some patients have even reported a complete stop to their symptoms altogether.
The key thing that people often forget is that extreme fatigue is not natural; it is a symptom of an underlying cause. Telling someone with ME/CFS to sleep more at night and to just get on with it is about as helpful as telling a brick wall to get out of your way. More often than not, it’ll make them feel useless on top of the already growing frustrations of being exhausted all the time.
Laurence Hennessy, the Health Promotion Program Co-ordinator at ME/CFS Australia (Victoria), said: “What the experience is, is that people who claim to be recovered always say that they have to watch what they do; being careful about how much exertion they do.
“Many people never return to their pre-morbid state.”
To be diagnosed with ME/CFS, symptoms must be ongoing for at least six consecutive months and not connected to any other medical condition. A number of criteria need to be met and since there is no test, all other conditions with similar symptoms need to be ruled out first. It goes without saying that this may take a while to do.
Through this lengthy process, it is easily forgotten that this is not in the patient’s head.
According to Professor Ian Marshall, Director at the University of Sydney Health Service, the most important part of treatment is educating the patient that it is a real medical condition.
“The approach has to be educating the patient that although it’s frustrating it’s real, it’s not imagined. The secondary thing that people get with these conditions is they get depressed,” he said.
“Most patients, in my experience, have needed psychological therapies in order to accept the situation. Acceptance is quite important.
“We can’t say how long it’s going to last. We can’t say ‘do this and it’ll make you better’ and that’s frustrating for everybody; for doctors as well because doctors like to make people better.”
It’s about acceptance, you see. It’s that easy. One minute you’re climbing mountains and running marathons (no, neither did I but you see my point) and the next you can’t get out of bed in the morning. Even a shower becomes a chore: shampoo, rinse… sit down and rest… condition… rest… dry.
You know you’re not an average 21-year-old when you plan your day to make sure you only have to climb those stairs once today.
So how long will it last? I don’t know. Will it ever go away? I don’t know. But how can I do anything on my bucket list if I’m the person on the train that even the elderly offer their seat to? Well, I can’t.
I take it back; acceptance is hard. Are you really surprised I was clinically depressed?
Tony Merrit, clinical psychologist and director of Sydney Clinical Psychology, believes sometimes a certain personality type can be seen in patients with ME/CFS. Often they are perfectionists and put themselves under a lot of stress but this quality can also contribute to their eventual recovery.
“It’s very hard for people to overcome chronic fatigue. It’s a very tough thing to do and it takes a lot of commitment because you can feel defeated quite easily,” he said.
“You need to work out what you can do, then on those days when you’re feeling better, not do as much and on those days when you’re not feeling so good, just try and do the minimum. From my mind, that’s one of the most effective things to do for chronic fatigue but also one of the hardest things for people to do.”
But it can be done. Those with ME/CFS have to be strong and they have to fight. Even when symptoms reduce as you get stronger, every day is a battle. You get to know your body and how it responds to different levels of physical or mental exertion. What I mean is you get to know your limits and you learn to pace yourself.
Slow and steady wins the race; never before has this been more true.
The biggest problem with ME/CFS – and the reason it is so poorly understood – is that the only way to truly sympathise with the condition is by experiencing it. A condition that is so widely misunderstood can feel quite isolating because it is not laziness; it is a real, physical thing. A medical condition. As much as we may want to, it’s not a matter of just getting on with it. It is a slow process to recovery; slow but not hopeless.
Returning to my own story, it was a February afternoon and once again I was back in that familiar office. More coughing intruded from down the hall, the snow had turned to sour, brown slush and people trudged heavily, making their way home through the dark. It was a glorious day.
I was sitting in the same tattered chair and eyeing the same tattered medical dictionaries. Nothing had changed, nothing whatsoever. Not the chair, nor the books, nor even the doctor. But my symptoms had; they were fewer now. The doctor grinned.
“Well, just look at you now.”
