Friday, March 31, 2006

Blame games: another game that we as patients must know how to play

I am in the thick of data analysis, which means that my energy level is ok, and I am not so "foggy". Yeah, there is still pains, the limited energy, the occasional cramps that wake me up at night, but I take these all in my stride. After all, I need to finish my thesis in time. If I do not finish it during this extension, no amount of pleading by my kind supervisor on behalf of me will help. From where I am, fibromyalgia and chronic fatigue syndrome is nothing more that a general term given to all the illnesses, most probably psychogenic that has yet to find a term.

Of course, it doesn’t help that I have a history of other chronic pain from other conditions. I am sure other FMS of CFS patients probably identify with this. Being old timers of pain, we don’t get much sympathy or empathy when we “conjure up” another illness.

Perhaps it helps; I am sure to a certain extent it does, to know that patients of other chronic illnesses are also afflicted with this self-blame. In certain cultures, the mothers of ill children take the bulk of the blame. I watched with empathy, and almost wanted to join into the chorus of “Me too! I know what it is like!” when someone talked about the self-blame, the “guilty feeling” and “scolding” received from others.

Although these people have a different illness than mine, a hardened, seasoned researcher like me had tears welling up in my eyes. I could relate to their stories of helplessness and self-blame when a young person, in this case their child is ill.

For those where the illness developed while the child was still young, the mother practically takes all the “blame”. It must be something that she has done. She must have not taken care of herself during pregnancy, or taken certain food while pregnant or breast-feeding, because she chose to breast feed or because she chose certain milk formula that was unsuitable and yet was careless enough not to notice it or maybe it is her genes and bad karma. In other words, she is a bad, terrible mother and caused her child to suffer as a result. She failed, big time as a mother.

If the child developed an illness when they were older, let’s say in the teens, the blame is shared. The older the child, the more blame the child shares. For people like me, who developed illnesses while away from home, we take almost entirely all the blame. It does not mean our mothers are blameless; they could have contributed to this through bad karma, failing to take care of us while we were young and resulted in poor health. And in some cases, failing to keep a tight rein of us, allowing us premature independence.

What kind of good does these blaming games brings? Nothing. Parents have divorced. Very frequently, relationship with in-laws have turned sour, people have been driven to depression and contemplation of suicide. Yet, I do understand why. (Anyway, I am supposed to, I am the "expert", isn’t it?)

I am literally an “expert” in my on situation, becoming an "expert" through my personal experience, and becoming an "expert" as my area of research happens to be so closely related. In case people think that this is “lucky”, no it isn’t. I always have to exert great care not to project my personal opinion and experience to what my data actually shows.

Being young and sick makes us freaks in a society where illnesses or incapacity are associated with old age or a stroke of extreme bad luck like a motor vehicle or other sorts of accidents. It is incredibly difficult to accept a young carefree person should be imprisoned in their own bodies. The physical limitations we have to face came too soon, and forced people around us to consider their own vulnerability. It is not reassuring to say that people would get these without any reasons. People will subconsciously wonder “ will I be the next”, or “could it happen to someone near me?”.

Sometimes, it is just that they want to shift the blame to others, and free themselves of any guilt. That is how we encounter cases like my mother-in-law who thinks that her son is anaemic because of poor diet, and insisted that he was not like that when he lived at home, ie indirectly shifting the blame to me, as I don’t cook much! (NOt as much as she does, I have FMS, remember?)

It was quite dramatic, even though I told her that alpha-thalassemia is hereditary. It is funny how she insisted that she is not anaemic (when her sisters all are!) and there must be other causes, other than the genes.(Hmmm, was he adopted? I did not dare to ask.) It is funny how she would argue about these with me, despite my medical background. If I were a layman, or uneducated and did not know much about the condition, would I have taken all the blame? I would probably have. Probably would have to live with the name of a “terrible wife” for the rest of my life, probably would think that it is because I don’t cook all the things that she instructed me to cook, or simply because my FMS and arthritis is making him sick as well.

Back to the group of mothers. At the end of the discussion, they were so relieved. And they were not the only group I came across to have these self blame problems. The more poorly educated and less informed they (their family and friends) are about the child’s condition, the more the blame game affects them, and their children. Children had told me that they hide their illness (and cried “ quietly at night, when nobody knows”) to avoid being scolded for getting sick.

While it is not possible to educate every man, woman, or child on the street on the spectrum of illnesses that people suffer from, it is important to get across basic points like the causes of illnesses. In case where scientist and doctors don't know the cause, I hope that they would accept their ignorance (and stop trying to act smart. Just because you can't find an organic cause, it doesn't mean that it must be psychogenic!). Myths should be dispelled, so that we, as patients, parents or caregivers could focus on the road of , and not wasting our limited and precious energy on these blame games.

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