Saturday, June 13, 2009

More about misunderstanding CFS

Before I realized that I had CFS, I was mentally stressed about my "newly developed antisocial" personality (I used to have so many friends and was always popular wherever I went). I found myself stealthily estranged from old friends, while I was not able to make new. Whenever conflicts happened between my friends and I, I always doubt myself: did my personality really changed? Was I really so stress about my career or personal life, as some of my friends suggested? Now I realized that I am just one of millions of CFS sufferers who not only suffer from physical problems but also from mental stress due to people's misunderstanding and misjudgment.
The major problem is come from the aspect of this disease: the victims DO NOT look sick. That's why it is also called "invisible" disease. Since doctors also cannot find out what problems are, patients' problems are easily considered as mental issues (CFIDS):
"Much to their distress upon seeking medical advice, such victims of CFIDS are often told, "Your physical examination and laboratory studies are all normal. Your symptoms are "psychological." In other words, "you're imagining your illness." Physicians and family alike would consider such patients to be "hypochondriacs." Victims of CFIDS would go from doctor to doctor, year after year, with no benefit."
Not only doctors, but also friends and families members don't understand CFS. Since CFS patients always claim "tired", people would think the "tiredness" they talk about is just like the "regular tiredness", like normal people usually feel after getting out of gym. So most people easily believe that those CFS sufferers are either "lazy", or mentally fragile. Let's just read a little more about what is CFS tiredness like (By FM/CFS/ME resources):
"We all get tired. It's part of life, and especially part of modern life. Think for a moment about the last time you were really tired at work. It's harder to focus, harder to function, but you can push through it. Now think back to the last time you were really sick with something like strep or the flu, too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you're sick like that, it's like your body just shuts down and demands that you rest.There's a big difference between the two types of tired, right? That second kind of tired is what people with CFS/ME deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and sleep constantly."
I myself used to be extremely tired that I had to quit my job (or whatever I do for living) together with almost any social life --- include hanging out with my dear friends --- because talking was just too much for me to suffer. But still, many people just don't believe that I was ill, and suggested that it was due to my "antisocial personality". Of course it is not that important how other people think of you. We all know this simple philosophy, but in situation like CFS, being sick like a person need to be taken care of in hospital but not even a life soul on this earth believe that you are sick, to be understood by others means totally different thing. I just cannot tell you how angry I felt when people looked at me, shaking their head saying: "you don't look sick", "you are fine", "just don't say you are tired. ok?", "why do you say that ('I don't have energy')?". At this point, what offends me is not what people's misunderstanding, but ignorance: how could people assume they know you better than you know yourself?
Under such overwhelmingly misunderstanding and judgment, I just cannot tell how much it would take me to retain my sanity. Needless to mention, those physical chronic symptoms alone could destroy a normal human being's confidence.
After I knew I had CFS, I visited some online forum and realized that I was not only one who suffered this kind of misunderstanding. Much worse cases are out there. Some of them were treated as mentally ill people, forced to spend rest of their life in asylum. The worst case was those who died by misdiagnosed and mistreatment, like Sophia Mirza.
Again, Ignorance kills!

No comments:

Post a Comment