When Cure won’t come
- The burden of chronic disease goes beyond the disease itself into every aspects of the person’s life. The idea of living with a disease without cure is deeply disturbing, regardless of what disease it happens to be.
- Clear information at the time of diagnosis and on every subsequent follow-up visit helps the person to accept the reality of their condition and adhere to treatment. Patient education goes a long way to prevent psychological stress and the temptation of taking desperate measures in search of a cure.
“When will I stop taking all these drugs?” She asks.
It comes out in the tone of a soul longing for freedom. She sounds strained, burdened. It is not an unusual question. People often want to know when they will be completely free from disease. It is a question that comes immediately after a diagnosis is made. “When will this be over, doctor? When will I get my life back? When will I stop being dependent on these medicines? When will I no longer need to make that trip to the hospital or chemist?
The diagnosis of a chronic condition comes as a shock. And even after years on medication and follow-up, it never gets easier. There’s always the longing, the expectation.
“You must have been very young when I started taking them,” she says, as is to emphasize a point.
It is not just age that separates us. Our understanding of her condition differs immensely. She thinks she has been made (by doctors) to take medicines for too long. She insists that her condition should be healed by now. Every time she goes for follow-up, she hopes it will be the last time she takes the medicines back home. On the other hand, I know that high blood pressure cannot be cured. Once the diagnosis is established, it must be controlled with drugs for the remainder of the person’s life. That is a fact she should have been made to understand those years ago.
She knows a little bit about it. Something about there being no cure. But she finds it hard to absorb that. This has led her to try all manner of things. Prayers seemed to help, in the beginning at least. Then on a follow-up clinic, the dose was increased. She prayed some more. And then some more. There is something about fervent prayers. A certain kind of calm that descends over a prayerful soul. As if a burden has been taken away. As if the blood pressure has gone down. Until the next review shatters everything.
She was losing hope. She tried everything: Leaves from a certain valley. Roots from some mountains. Powdered rock dug out the depths of some cave. Raw eggs from some exotic bird. A bitter and nasty liquid from a medicine man, all the way from Loriondo!
“All these to get rid of hypertension?!” What a tormented soul. How one suffers more from the search of an elusive solution than from the affliction itself. She sees my incredulous look and attempts an explanation.
“Where I live, the stigma is terrible. If you have hypertension, people will point fingers at you. If you have to carry medicines in your handbag every day, people will avoid you. So one suffers alone. It’s not that there’s pain, it’s not that there’s that much fear of death. It’s the isolation, the loneliness, the sense of being branded by the disease, especially if you are only thirty at the time of diagnosis.”
“So how did you get back to treatment?”
“It didn’t take long. It started with persistent headaches and a general feeling of being ill. I counted my losses and went to the hospital. At the initial assessment, everyone became frantic. I don’t remember what the doctor told me, just that they had needles in my veins rather hurriedly with drips running. I remember vaguely someone warning about a stroke. I had to spend a few days in the hospital ward before I was allowed to go home, with packets of drugs. I haven’t missed a single dose since.”
I explain to her the realities of lifetime conditions like hypertension, diabetes, asthma, and others. It is an explanation I have given to so many.
The burden of chronic disease is never easy for the individual. The idea that you have a condition that you will live with for the rest of your life is an alarming one. The thought of having something ‘incurable’ is fearsome indeed. This often leads to desperate measures and lands many people into the hands of unscrupulous characters promising to cure them. Just some weeks before a friend of mine explained how her friend’s mother had died while receiving some form of treatment from a shady “doctor” who promised he could cure diabetes mellitus. She had lived with it for long, was tired of the daily injections and tablets and the constricted dietary options. She wanted freedom, normalcy. She lost it all. There are many who simply stop complying with the treatment. This frequently leads to early onset of complications. Even to those who remain on treatment, lifestyle adjustments can often be daunting. It is not easy for anyone to have to modify their social life, diets, work, and other aspects of life in line with a health condition. By any measure, these changes signify loss and constraints.
The burden of chronicity is always heavier on the individual than can be understood by the family, by their broad social world and perhaps more painfully by their clinicians. One never gains experience in suffering. Even after years of living with a condition and possibly learning a lot about it, there’s always the chance that some complications will occur that’ll make it unbearable.
Chronic diseases progressively evolve for the worse. They get harder to deal with even for those who do their best to handle them. They make you less productive, less socially engaged, and increasingly less self-sufficient. You sense that you have become more and more troublesome to those around you, to the professionals who treat you and to the system itself. Those sensitive to these changes (and every sick person is very sensitive) become psychologically affected as they sense the world becoming less and less a place of their belonging.
The response to this is withdrawal and isolation. You adjust your social life to fit the realities of your disease. You learn to reveal little, to bottle up, and to be always afraid that the more people know, the less accepting they will be of you. The energy expended in dealing with your circumstances means your entire being is reduced to the sickness itself. You can no longer function fully as a person, becoming instead that person who lives with hypertension or diabetes or asthma et cetera.
This problem is a complex matter and includes social, medical, economic, and other distortions that attend living with a lifetime condition. One’s social reality is modified not just to accommodate but really to revolve around the disease itself. As all will understand, this is the definition of bondage. When all your social liberties are affected, the person will likely descend towards bitterness and depression, which then feeds off the condition to produce a less wholesome individual.
Economically, not only do you spend everything on treatment because you want to be liberated from the disease, but also find that you may be far less productive, thus lower income. The building pressure drives one to want a cure at all cost; a cure not so much of the primary disease itself, but the devastation it has caused on the person’s life. It is a search for what will liberate the person, heal the family fractures, reduce the economic burden, and bring a semblance of wholeness. When this is what you seek, anything that promises just a little of it will seem attractive.
When cure cannot be found, what one needs is a lessening of the burden implicit in living with a chronic condition. While we may not be able to deal with the social pressures that complicate the lives of those living with chronic conditions (and everyone else), it would help to make them more informed so that they live not in expectation of a cure, but in full acceptance of their condition. Knowing the implications of a diagnosis from the outset helps to avoid sliding into unrealistic expectations and thus prevents all the anxiety that attends such expectations. It’s best to know from the beginning, that cure won’t come.
Many chronic conditions progressively get worse even when properly managed. the importance of proper treatment is delaying the complications of this progressive worsening.
Managing chronic conditions with medicines alone is only partial. The approach should be multidisciplinary, focusing beyond the physical manifestation to the psychosocial realities of the patient and being sensitive to the economic effects of the disease.
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