Lakshmi Kutty

Hina Begum is a thin, reedy woman, nearing 40, living with her two teenaged children. Her eldest daughter, Shabana (married, has two young children) came home for the younger daughter Salma’s marriage three months prior to when I met them, and had been staying with Hina since then. Shabana’s husband, living in Parli in Maharashtra, has been suffering from a kind of degenerative illness because of which, over the last three years, he has lost the use of his limbs, and can communicate only through sounds from his nose. Shabana takes care of his needs. He urges her to take the children and visit her mother; she doesn’t like to leave him alone, but does find this time away somewhat relieving. Shabana, her in-laws, and her mother Hina have tried all kinds of treatment to get him better, but a lot of money has been spent with little results.

Shabana’s tough life worries Hina so much that she suffers from constant headaches. She said repeatedly to me, “If I think a little about my child’s life and what all she has to deal with at such a young age, that’s enough to send my head spinning.” She consumes Calpol almost every alternate day, and has a small box of Zandu balm by her side always. She purchases a strip of ten tablets which she consumes in about eight days. She works in two people’s houses in the morning, returns for lunch, and goes out at four to work in three more people’s houses. When she’s home for lunch she tries massaging oil on her head, eating a tablet and sleeping so that by her evening round of work the headache is gone; this solution doesn’t always work. When she has to wash a lot of dishes and clothes, it gets worse – she shivers all over, and is totally wiped out when she returns home in the evening. She tries tying her sari pallu tight around her forehead hoping for some relief. On such days she invariably gets a fever by the next day. She sees her regular doctor, who prescribes some medicines; she takes them for a day or two. This state of fatigue, and the chronic worry about her daughter causes Hina’s BP to drop occasionally; she gets dizzy, weak, and isn’t able to get on her feet. She then goes to the doctor and gets a bottle of glucose administered, and is back on her feet in an hour or so. She comes to the clinic by auto on such days but returns home walking.

Hina Begum is seriously unwell, severely emaciated, and is convinced her heart is weakening from the constant pill popping. This chronic unwellness is a regular state of being for Hina, but she has never taken a course of medicines for the three days for which it is prescribed; she only does so till it gets her back on her feet. When she’s pushed to the edge she gets a bottle of glucose administered, which her doctor provides at a subsidized price from knowing her for so many years. Chronic emaciation and fatigue is the context in which Hina’s ill health/distress occurs. An understanding of this insurmountable context is crucial for the health care system if it is to address her distress. The casual nature with which Hina and some other respondents discussed their experiences of ‘glucose chadake aa gaye’ stunned me. It seemed to be the fastest way to enable them to get back to their daily life.  It indicated phenomenally depleted reserves which were probably replenished by the infusion. While medicine views such kinds of treatment as irrational or illegitimate, for the ordinary person they alleviate distress and help her to get back to her demanding routine. These treatments may not be curative or improve quality of life, but they ameliorate distress. This aspect of illness treatment had slipped silently into the realm of commonplace occurrences for this segment of the population.

What transverse-section view of India’s health system are we exposed to from the location of Hina’s experiences? Patients are aware that symptomatic treatment is all that medicine can offer for India’s poor. They treat these medicines with the amount of realism they merit in their scheme of things, as quick fixes. The picture that emerges is that symptomatic treatment is all that can be offered to them.

Excerpted from Lakshmi Kutty, “The ‘Intractable Patient’: Managing Context, Illness, Health Care” in Anand Zachariah, R. Srivatsan and Susie Tharu, eds. Towards a Critical Medical Practice: Reflections on the Dilemmas of Medical Culture Today (Hyderabad: Orient Blackswan, 2010).

The excerpt above is from Lakshmi Kutty’s essay “The Intractable Patient” which records Hina Begum’s experience of ill-health as a lower middle class woman in the old city of Hyderabad.  Unexpected health expenditure is often ‘catastrophic’ because it can drastically alter the life circumstances of families.  However, there are also contexts in which the cost catastrophe has the ordinariness of an everyday rhythm.  Hina, as a typical example, is not only endemically ill (poor nutrition, poverty, overwork, crowded living spaces, mental tensions, etc.) but is also staggering under the cost burden of health care and its inability to address her illness.  Her response to her illness is to work out a minimalist mode of accessing, using and giving up on medicine.  In medical terms, her actions are irrational, non-compliant.  Yet, an interview with her showed that she has figured out ways of working from day-to-day, addressing her most pressing symptoms, of giving the slip to the prescriptive formats of medicine and of somehow making do with what she can glean from it.