REACHING OUT
The violence of disease
USHA JESUDASAN
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How do we help a sick person cope with the indignities of illness?
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Photo: Vipin Chandran
Gentle kindness: Remember patients have feelings too.
To be diagnosed with any kind of incurable disease is one of the most fearful aspects of life. Disease hits us when we least expect it. It is painful, frightening and life-changing.
Disease ravages lives; it doesn’t care whether you are rich or poor. And it will turn your life upside down for the better or worse.
Rajendran, in his late thirties, was a happy, young man climbing up the corporate ladder. He had a stressful job that often gave him a severe headache. But he didn’t mind. He had so many plans for himself and his young family; slowly each was becoming a reality. The headaches got worse, his eyesight deteriorated and finally his doctor told him that he had a tumour in his brain. Rajendran, “I felt like someone had punched me in the stomach at first; then I went just numb. Suddenly my life went from safe to uncertain.”
Once hit by disease, one is always uncertain and anxious about one’s safety. “Will it happen again?” Fear begins to rule one’s life. Even when it seems that we are cured, there is always a nagging thought: “Will it come back again?”
Violation of dignity
Many diseases completely violate our sense of being a person, our dignity, and our choices. For example, a person with cancer is treated with ferocious chemotherapy. He/she loses weight and hair, the skin darkens, appetite reduces, and they are left looking very unlike themselves. Sometimes, tubes go in and out of their bodies, they dribble, they need to be catheterised, or carry an embarrassing colostomy bag.
“Gosh, I didn’t recognise you,” visitors say, embarrassed at having to look at a plastic bag containing greenish brown liquid outside the friend’s body. Nobody knows what to say and visits become shorter and shorter. At times like these the violence of disease becomes very real and apparent.
Many diseases degrade a person and remove him/her of their personal dignity as a human being. One is stripped of soft clothes and put into coarse, nightshirt-like garments that gape open at the back; needles are stuck into skin that is pale and fragile. One is turned over and bathed by strange hands. There is little privacy.
One no longer has the choice of what to eat, when to sleep, where to be; choices are often made by strangers. A person, in this state of indignity, does not feel kind or gentle towards himself or anyone else.
Those who are very sick need special gentleness and kindness from family friends and work colleagues. A visit, or a group of friends visiting, can turn a sick person’s mood from gloomy to high very quickly. Often we turn away from people who are sick or in pain, as we don’t know what to do or say. When their diseases are prolonged, our caring too seems to stop. This is the time when we need all our reserves of patience and compassion to see them through this painful period with our presence and our love; encouraging them to take one day at a time or anticipating their needs and doing something about it. News too about the office or family gossip, or the rest of the world helps them feel still connected and not lost entirely to the world of illness.
How do we help a sick person cope, with his/her disease and all its indignities? I think the first way is always to remember that the sick person is a human being, more fragile than we are, who would like to be treated with courtesy and kindness. If you are a healthcare provider remember they are Mr. Sundaram, Mrs Meena or Ravi and not bed 21, 62 and room 104.
This is the first thing that disease does; it takes away the dignity of a person’s personhood. They go from being a person with a name to a bed number and then later identified by their disease: the HIV patient; the Alzheimer’s patient and end up as the body.
Disease violates, and places wizened, flabby, obese, scarred, bodies on the examination table. The person is vulnerable in this semi-naked position. For a doctor or nurse, being compassionate can mean allowing a soft shawl to cover them, and being sensitive to their undignified situation.
Making choices
Disease also takes away much of a person’s freedom and independence and their power to make choices for themselves. It especially removes the freedom to move around. Losing independence, being confined to bed, sometimes tied up by leg and arm straps, having numerous tubes inserted into every conceivable place makes a person feel imprisoned. Although these confinements are for the good of the patient; look beyond what is confining them and point them towards a time when they will be freer and more independent. Ask “would you like”, “shall I turn you around”, “would like…” gives them the power of making small choices
Finally we need to help our loved one to come to terms with his or her disease. It may be terminal or not. But, nevertheless, our reactions to their indignities and our loving relationship with them may be the factor that brings them peace and acceptance of their disease.
That no matter how scrawny they have become or how bald, or how smelly, we still love them deeply. That we still hold them, feed them and clean them with love. That to us they are still beloved.
It is only with this kind of gentleness that the ravages and violence of disease can be healed.
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