Chronic Fatigue Syndrome: An Invisible Illness
What's it like to have an invisible, medically unexplained illness? Without using expletives, it's like a barrage of attacks from every angle imaginable. It starts off with the internal, bodily and physical symptoms - constant exhaustion, persistent sore throat, brain fog, light, sound and smell sensitivity, muscle pain and weakness, sleep disturbance etcetera.
The name 'Chronic Fatigue Syndrome' fails to articulate how debilitating the symptoms of this condition are, which is why there is constant debate over whether this is the correct label (people also use the term 'myalgic encephalomyelitis' - ME). It's important to understand that these symptoms cause more than severe physical discomfort, they impose limits on pretty much every domain of daily living. Let's take, for instance, a basic requirement of day-to-day life, that of personal hygiene.
For those with severe 'Chronic Fatigue Syndrome', fatigue, muscle weakness and pain can make it impossible for them to wash their hair; even being able to lift one's arms and hold them long enough over the head is just too exhausting. That's assuming that you can get into the bath at all (forget showers, standing for any period of time is almost impossible for someone with the most severe forms of CFS). How do I know this? Because I had severe CFS 20 years ago and washing my hair on a regular basis was frankly out of the question.
So, if we work back from this, it is easy to see that the more physically and mentally demanding activities such as housework, cooking, clothes washing and even following a storyline on TV can be overwhelming for someone who has CFS. Hobbies, exercise and friendships (basically anything fun) are often the first aspects of life to fall into the black hole caused by CFS.
Many people try but desperately struggle to continue with paid employment and educational courses, which can become very difficult when you need a roof over your head. But from here on in the situation can actually get worse, not better, because there is still a great deal of misunderstanding and stigma surrounding this condition. Doctors are often flummoxed, family can be disbelieving and critical and the workplace can become a game of cat-and-mouse, where symptoms are hidden, tasks taken home to complete at weekends and favours called in to preserve the illusion of normality.
Everyone's personal experience of CFS or indeed any illness is individual so it's difficult to say what the most challenging aspect of CFS is - the symptoms themselves or the impact of a life interrupted. But what is clear is that, for some, the fight for a diagnosis, comments from loved ones such as “if I were you I wouldn't sit around all day, I would pull my socks up and get on with life!" and the constant worry about money and being able to pay the bills if work goes down the drain, can impact on the illness and compound an already grim situation.
This is why it is vital that anyone with a medically unexplained illness (others include Irritable Bowel Syndrome, Fibromyalgia, Mal de Debarquement Syndrome, to name just a few) finds proper professional and social support. At present, the National Institute for Health and Care Excellence (NICE) recommend Cognitive behavioural Therapy and Graded Exercise Therapy as treatments for CFS. These can help to break the 'boom-and-bust' pattern that can emerge in an illness like CFS.
In other words, when we feel slightly better, all those tasks like the washing and shopping that have been ignored come to the fore and we try to get everything done that we possibly can. This is damaging as a huge burst of activity will simply trigger symptoms again, which will then force us back to our beds for days, weeks or even months. CBT and GET can help people to set a more gradual and sustainable increase in activities, as can a technique called pacing. Pacing differs from GET as rest periods are integrated in the activity management programme. However, none of these behavioural therapies deal with underlying physiological abnormalities that are now being unearthed in research. For instance, groups of scientists are currently looking at mitochondrial function, immune activation and gut microbiota in relation to CFS. And in time, there may be additional treatments that rectify these physiological mechanisms but there is still a fair amount of research that needs to be completed before these are available. In the meantime, there are many self-help techniques, in addition to the activity management strategies mentioned, that can help to get your life back on track.
So, how does it feel it feel to have recovered from a severe period of CFS? It feels like being part of the human race again. And I'm grateful each and every day for having found a way back.
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