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Name of CFS & ME Activism

Posted Sep 29 2008 6:20pm

I hate the name Chronic Fatigue Syndrome, although I admit that the paralysing and disabling fatigue is one of the major symptoms. I cannot stand the attitude behind the name. And I feel the name is blocking any opportunity for medical research and community support. It suggests that the illness is about malingers complaining about trivial tiredness and keep enjoying sleeping-in in the morning.

For the record, I have not seen a single MEite who is enjoying being ill and disabled and struggle every day with debilitating symptoms, social stigma, limitations and etc. etc.

Luckily, I haven’t come across with dole bludger who pretend to have ME/CFS and enjoy lazy life with the expense of hard working Australians. If I did, I could strangle the person, only I don’t have strength to succeed it.

I don’t consider myself as ME Activist. Activism involves politics and it is a stressful commitment. I don’t think I have a capacity for the commitment due to the severity of ME/CFS I live with. I’m just being me, searching for truth and justice.

Although having said that, I still want to be part of spreading the awareness. I believe that awareness is the key to change people’s attitude, and then, it will lead to medical research, practical support and hopefully little less debilitation in suffering.

My tool for spreading the awareness is “blogging”. I write down my honest thoughts, feelings, every day boring struggle and everything about my life with severer ME/CFS to my blog. It is mainly because I need to let them out from my system to keep going. At the same time, I’m hoping that people would realise what this illness is all about when they read my blog. Then, they will realise that there is something really wrong about the way modern society treats ME/CFS and people with ME/CFS. As a bonus, I gained network of good people who are also living with ME/CFS and/or other invisible chronic illness.

Recently, I became very aware of my online friends are frustrated for me and trying to help me. Some got really upset with me… I seriously thought about stop blogging all together. I cannot lie. I cannot hide my feelings. With my life circumstances, frequent emotional break downs are unavoidable… And I end up hurting kind people’s heart. That is not really what I want.

That is not really what I want… The only way to make my friends understand is to keep blogging…

ME or CFS, it doesn’t mean anything when people are not interested in understanding them. When people called the illness CFS, I get the urge to correct it and call it ME. I slowly learnt to go with the flow and call it CFS if people prefer to use the term. There may be some other reasons that they need to use the term Chronic Fatigue Syndrome instead of Myalgic Encephalomyelitis. Probably government would not recognise it if they use ME.

Today, I had a look at the application for disable parking permit. Apparently, I need to take the form to Queensland Transport and pay the initial fee. So I decided to wait for my friend M to come and see me again some time. I may need to check on their website and see if I can pay it over the internet. As you know, we MEites can only do one thing at a time and each task takes longer time than able people…

Anyway, it gave me a happy surprise. When I check the section doctor fills in, I saw the condition as “severe Myalgic Encephalomyelitis”. Before that day, doctor only referred my illness as CFS. When I used the term ME, there was awkward moment. So I decided to go with the flow and use the term CFS. I didn’t ask him to change the name.

Awareness came within his heart. And name change happened because of it.

It is ironical. We push for name change to increase awareness. But name change only happens when there is a true awareness about this illness.

Filed under: ME/CFS, Thoughts | Tagged: Awareness

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