Tuesday, March 28, 2006

"The hide and pretend game": another game we play

In front of me is a pile of transcripts, transcripts of people who had opened their hearts to me. It is an irony, isn’t it? That they, strangers who have only seen us for the first time will open their hearts and talk openly about how they hide their illnesses from family members and friends? Their disease is just one aspect that contributes to their misery. They are also sick of the worries and the naggings to “take care of themselves better”. There is a pressure to conform to what others believe in, even when they know those believes are no more than health myths that did not apply to them.

These patients told me about how they “hid” or “keep it a secret”, of going to doctors on their own, and quietly taking their medicines when they get a relapse without telling anyone. It surprised us, the healthcare “professionals” and it really worried some parents in the group when one patient confessed of hiding the truth since he was about eight or nine years old. The adults never suspected that a child as young as that would do that, but I knew he was not an exception. Anyone who had been sickly as a child knows how “irritating” it can get when parents “fuss” about it.

The social medicine literature is littered with such “anecdotes”, reports that hard core, “evidence-based” clinicians tend to overlook in their focus on the drugs with the best evidence of efficacy and benefits vs risks. If they had known accepted this, they would have somehow tried to intervene.

A child, or even a adult hiding their life threatening illness from loved ones spells loneliness and poor social support at best, and could be the weakest link is terms of getting the life saving medical care at times.

Here am I, joining the “hiding” game. I am changing my blog address for the third time, as I suspect my husband my have found out about it.

Why blog if you are so worried that others may read it? Well, the answer is I don’t care if you read it. I don’t care if the whole world read it. All the better as more people will understand patients like me more.

But I don’t want my family members and close friends know about it, not after how hard I try to appear "healthy", and gather every once of energy I have despite being very tired when I meet friends. That is the sort of “privacy” I value. Like the patients I met, I don’t care if you know about how I feel, how easily tired I am, how much pain I am in or how miserable this illness causes me at times. But I don’t want my family and friends to know about it. They will feel terrible, and I don’t know what to do with them. I can counsel the family of my patients professionally and effectively, but I can’t offer any counsel to my own family!

I have a research participant who is a medical social worker. She is playing the “hiding” game, and she is one of those people who hide her illness zealously from her family. She shocked us all. Not she, my co-researchers all thought (I was not surprised at all), she is just too good a counsellor to the families and the patients. The trouble is the better we understand how badly someone’s illness can affect their family members, the more we try to hide about our illness from them.

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