I watched a documentary- I Remember Me (2000). It is all about a little understood disease, which has been classified as "Chronic Fatigue Syndrome(CFS)" based on its symptoms. It broke my heart, to see people who contemplate suicide out of sheer physical and mental pain. Physical pain from the disease.... Mental pain from the worry of what it could be, how it will unfold, when it will end, what all might happen next.. And the psychological problems associated- how to explain your position to society, how to deal with people who make fun of you. Even doctors labelled some patients as hypochondriacs, dismissed it as part of hallucinatory reactions, God knows what...
I could understand this from a very personal viewpoint. I have seen someone very close suffer from a debilitating condition that they had to put up with abruptly for 6 years of life... It was literally like a 'Maaya rogam', we never knew what caused it, we are not sure of why it ended. But throughout, we tried everything under the sun, specialists from the best parts of the world, from the best institutions, and there was no root cause to pinpoint. Watching this documentary, I remembered how they used to be in pain abruptly in phases, and totally normal otherwise, living life, pursuing a career.. But when they got into the sickness phase, totally bedridden, limping, needing people's support to walk, like a cripple..
Some thick skinned people made fun, one of them was a doctor relative! He asked if they'll start a club for this disease! Wow, just because you don't suffer it, and because you have not seen them suffering it, you assume it to be a nothing, a case of hypochondria, lies or show-off...
Finally the person in question got a bad bad attack in front of everyone, and perhaps they understood what the patient goes through. It is harrowing even for the family, the patient retreats & shuns the public when their sickness is at its peak, they resurface only on days when they feel okay.. So the society assumes that the sickness is all a farce, or that the family members don't care, or that the family members are not doing enough to make life better...
Like the people interviewed in the documentary said, the patient almost prays to God, o God, at least let this be cancer, so that I know what it is, I know I will die in a particular time frame, people will understand & not make fun of me, at least I'll get some sympathy if nothing else... that is much better than this agonizing mystery.
Of course, my close friend was lucky, doctors sympathized with the condition, they accepted that something was terribly wrong... Whereas, patients suffering from CFS have even had doctors make fun of them!! Terrible...
I guess the solution will emerge if one or two doctors come down with this condition, then they'll know that they are not making it up, hallucinating, showing off, etc.
When HIV/AIDS wasn't understood, it was clubbed into the same group of mystery hysterias such as CFS. However, AIDS patients have largely been redeemed today, at least enough research has pinpointed the root cause, and studies are underway to overcome it.
The first documented cases of breast cancer were also dismissed as hysteria.
All that these patients of CFS asked for is, please give us a name for our disease, acknowledge its existence, nothing more....
I could totally understand, a name is a tag for individuality, a name acknowledges the existence of a separate identifiable entity.
Just as our name is a part of us, our suffering deserves to be acknowledged and labelled too.
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