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When tiredness stops your life

Karla Dondio
Published: January 8, 2013 - 11:59PM

Chronic Fatigue Syndrome (CFS) is like a ghost that marauds around “real” illness. Though it’s recognised as a legitimate medical condition, the stigma that sufferers are dramatising, even imagining, the symptoms still prevails today.  

In my early 30s I was bedridden with CFS for two and half years. What preceded this period of incarceration was an unrelenting fatigue that dogged my days making it difficult for me to work and carry out simple domestic tasks. With my health declining, I moved from Melbourne back to the country and into my parent’s home due to an increasing need for physical and emotional support.

By Christmas Day 2001, I could no longer walk the twenty metres it took to get to my parent’s kitchen. On the occasions that I did need to leave the house for doctors’ appointments, my mother would transport me in a wheelchair because I was too weak to ambulate to and from the car. On my worst day suffering CFS, I couldn’t walk the five metres that I needed to in order to use the toilet.

It’s approximated that around 90,000 Australians currently suffer with CFS (otherwise known as Myalgic Encephalomyelitis). For those unfamiliar with this condition, CFS is associated with prolonged periods of extreme fatigue with symptoms that may include muscle aches, flu-like symptoms, headaches, difficulty concentrating and sensitivities to chemicals. One of the most notable characteristics of CFS is that rest does not abate the symptoms. Research isolates that four out of five people afflicted with CFS are women citing hormonal factors, viral infection and general life stressors as the possible cause.

Thirteen years on and now recovered, I notice that little progress has been achieved in terms of CFS. There’s still no medical test that can confirm a diagnosis, simply a checklist of symptoms that narrows it down to CFS. Second to this, there’s no finite medical cure in existence, only advice on how to manage the debilitating symptoms. Recent reports highlight a lack of government funding for this state of inertia with only one significant medical research project ever being dedicated to progressing our understanding of CFS.

Due to its ethereal nature, CFS is known to engender a lack of empathy from people. As a result, the kind of treatment sufferers can expect borders on belligerent. I know a number of sufferers who now have fractured relationships with their family as a result of their family’s inability to accept that CFS is a genuine condition. Unfortunately, these are not isolated cases.

Fortunately, my family were incredibly supportive while I was unwell; nonetheless, some of my friendships were adversely affected by CFS as well as I had to deal with this kind of attitude: (as per verbatim)“Karla should just get off her arse and do something with her life”.

Even now, it’s difficult for me to get people to understand the extent of debilitation that some people experience with CFS. In my case, I wasn’t simply bound to my bedroom; I also couldn’t read, watch television or listen to music because I would feel sick and exhausted within seconds of performing these activities. To sit up and talk with visitors was limited to minutes as opposed to hours. One woman who I met at a doctor’s clinic told me she had to sleep on the floor because even “gravity felt too heavy”.

The lack of understanding that surrounds CFS only compounds the isolation and loneliness that sufferers experiences. When I was bedridden with CFS, I used to play a game of identifying animals in the shapes that I saw in the pinewood on the ceiling of my bedroom just to expend time. I also cried every day for two years while the seasons outside my window functioned as the only tangible mark of time for me.

As sufferers spend days and months, even years, tending to the most basic of human needs such as eating and hygiene, friends and family inevitably move on with their lives achieving career milestones, enjoying relationships and starting families.

Traditionally recovery from CFS takes ten years. For women suffering CFS in their prime biological years, the slow recovery rate can impinge dramatically on a woman’s capacity to bear children and assume responsibility for their welfare. For women who experience extreme debilitation, like myself, the choice to have children is taken away for a large period of time. This is probably one of my few regrets in life.

It took me a decade to rehabilitate back to full health with the assistance of an integrated medical practitioner. And though it would be easy to feel bitter about the decade I lost to CFS, mostly I feel incredibly grateful that I have regained my health which I know is not afforded to all who are afflicted with illness.

I only hope that the mystery that surrounds CFS is dispelled in time so that the debilitating symptoms and associated shame of suffering CFS is altogether eradicated.

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