As many as 180,000 Australians directly affected. Around 1 million Americans. Possibly 17 million worldwide. Classified by the World Health Organisation as a neurological disorder. Significant enough that the Red Cross won’t accept blood donations from sufferers. Recently reported in TIME magazine, recently acknowledged by Obama. Recently linked to a retrovirus (XMRV). Can be as debilitating as M.S. or late stage aids. And there is no cure and limited treatment available.
It is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome awareness day (and whole week, actually).
So we already know the facts and the confusing and often conflicting treatments that are available, and we know that the name chronic fatigue syndrome should have been long tossed out the window given that fact that chronic fatigue is a symptom of pretty much every ailment that exists, while ME/CFS is a specific illness that meets a strict criteria.
So rather than rehash all those facts even further, what does this all look like? In reality, in real life?
It means hitting the pause button on life. Indefinitely. And then fading into the background.
Living with someone who suffers from severe ME/CFS, it is easy to lose sight of what’s normal. You forget that it’s not normal for her to collapse on a weekly basis. That it’s not normal for her to be thrilled when she can manage a walk all the way to the letterbox and back. That it’s not normal to see her in constant pain, 24/7. That it’s not normal to have to plan an outing weeks in advance to make sure she will have the strength; and even then, no promises. It’s not normal to see her robbed of things that are normally taken for granted – like ability to eat most foods, socialise, do the things she loves.
When someone else close to me first got the illness, of course I didn’t realise. We didn’t even know what it was. The flu. Of course. She would be better soon. Just 16. Never mind that she could barely eat, and just…didn’t..get..better. And now 11 years later, the flu is still there. But worse. “Just chugging along,” she said, living daily with the aches and fevers and exhaustion, waiting for a long promised treatment that is yet to materialise, yet to bring hope. Life on pause. In limbo.
The courage of these sufferers astounds me. Neither of these people I love complain. Ever. Not even like me, even though they have much more of a right to do so having been robbed of so much; the little everyday things that people take for granted. Like popping down to the shops – just for fun, and without it causing aching legs and a throbbing head and sending your heart rate over 150. Like working full time. Like popping around to see friends for coffee.
As much as I try to ignore what this illness has done to my family and those I love simply because sometimes it’s easier to choose not to see, when I stop and reflect…this illness is real, it’s impacts are hugely significant not just on the sufferer but on their whole family, it is isolating, and most sadly, it is hidden.
So today I am wearing blue. For awareness day. To stop myself from continually ignoring CFS/ME and avoiding questions about why my mother is so ill because it’s simply so hard to explain. In the hopes that finally some real research will be done regarding these recent serious developments that have emerged in the field. That finally the whole ‘yuppy flu’ sterotype can be put behind us and GP’s can realise the reality of this disease, and the thousands who go undiagnosed can find sanity.
And on a lighter note, this Sunday, I am going to hear someone called Dr Butt speak on Faecal Microbiology in Patients with ME/CFS. Now that, is pretty funny.