Martyrs To A Name

This photo is another part of my Enchanted Sleep series, on living with myalgic encephalomyelitis, or ME, more commonly known as Chronic Fatigue Syndrome, or CFS, in the US. The fact that the US calls it CFS instead of ME as the rest of the world does is a big problem, though it might seem trivial at first.



The name Chronic Fatigue Syndrome came about in the mid 1980s to create an insurance loophole so patients could be denied coverage. The disease ME has been around forever, under a wide variety of names, but it is rarely given a new one purely to hamper giving aid to those who have it. There are numerous articles all over the web about it, but I especially like the ones at NameUs.org and The Hummingbird Foundation.



The name Chronic Fatigue Syndrome sucks. Fatigue is a symptom, not the illness itself. Not only is it very unhelpful in actually describing the disease, it's patronizing and trivializing. Because the definition of CFS is so broad, almost any chronic illness (and many mental illnesses) can be made to fit within them. This has greatly contributed to the widespread belief that people who claim to have CFS aren't really sick, that, at best, they're suffering from clinical depression.



Depression is an evil bitch too, and I have experienced both, but it is<i&bt; not the same thing as ME<-i&bt;. Here's a simplified example of one of the many differences between depression and actual ME: when you're depressed, things that once brought you joy no longer do, and you feel unmotivated and apathetic about everything. When you have ME, you long to be able to do the things that once brought you joy, but your body will not let you. Many times, having ME will bring on clinical depression, but the depression is a symptom of the disease, it is not the disease itself.



There is a big movement to officially change the US's name from CFS to ME, bringing us up to speed with the rest of the world. Obviously, I am very much in favor of this. Even places where the disease is called ME and the medical community agrees it's a real, physical illness, it's hard to get taken seriously, by the public or medical community. There is still a lot of ground to cover before we get the recognition we need.



This photo is about the lack of attention and care we with ME have had, and the horrible effects of what merely changing a name can do to a whole group of people. The girls are shown discarded, piled like trash... the medical community doesn't like problems it can't fix and seems like it would much rather we suffer in silence than attempt to get whatever help we can. Since the research is pointing more and more to ME being a neurologic disease, specifically of the central nervous system, I wanted to highlight the spines and necks, and the added feeling of fragility it added was a bonus.



It's really ridiculous that we have to not only fight our bodies every day but all the ignorance, misinformation and prejudice. <b&bt;However<-b&bt;, I am quite excited to introduce you to the documentary about ME, <b&bt;Canary In A Coal Mine!<-b&bt; Not only is the film going to blow you away, I am also going to be partnering with them in some cool ways which I will share when the time comes :) For now, I'll leave you with an excerpt from their site:






"How would you begin to nourish your body if every food you ate, every object you touched had the capacity to cripple or heal you? How would you fill your life, and what would you toss aside, if you only had three hours a day to live it? What worlds would unfold before your eyes if everything you knew suddenly came to a grinding halt?



Canary in a Coal Mine is about how Myalgic Encephalomyelitis ("Chronic Fatigue Syndrome") may be an indicator of the human costs of our changed environment; a medical system that is ill-equipped to treat an illness that challenges its every assumption; and the power of a name."





I've already ranted enough for one day, so I'll finish up. For anyone wondering, fibromyalgia does seem to essentially be the same thing as ME, although there are disagreements about this. Lastly, wish me luck tomorrow as I get my next round of nerve-blocking injections to dull the constant pain I feel. It usually puts me out for a little over a week, but hey, maybe I can catch up on a lot of editing :)





Models: myself and Aly Darling.






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