Despite medical tools and new diagnostic devices, are we ready to break the taboos once and for all?
In the year 2017, Terra-Blue founder Rajlakshmi Borthakur made it to international headlines for her invention of a smart band/glove whose special medical algorithm collects information and can warn us before a seizure attack. In a country with more than 5-6 million active epilepsy patients, this seemed like a miracle. However, even after being tested by about 120 patients in NIMHANS Bangalore, with positive results, this device wasn’t accessible to patients from rural interiors and wasn’t affordable by all. The same holds for Assam–which is Borthakur’s home state, and not many are familiar with the device vocabulary either. Furthermore, social taboos around epilepsy and seizures prevent a large section of patients from getting or discussing medical aid.
Epilepsy is generally defined as a neurological disorder that is “characterised by an enduring predisposition to generate epileptic seizures, and by the neurobiologic, cognitive, psychological, and social consequences of this condition”.
It is perhaps the most misunderstood and stigmatised across societies. Because of this, the recent news of IIT Delhi’s research team is pertinent for all. The team has come up with a patient-friendly, non-invasive diagnostic tool to help epileptic seizures. What does this mean for us in northeast India? Not too long ago, in Assam, statistical data about active neurocysticercosis afflicting tea garden workers of the Adivasi community reported that the risk factors are high due to the lack of education, practices of animal husbandry and so on. But is that all?
We are equipped with a lot of tools that ensure conclusions and yet, none of these scientific methods and medically grounded findings explain how the experience of epilepsy among patients is very gendered.
This is a tough question to dig into. Despite government-aided medical facilities, even the devices face the challenge of bringing a “closet” ailment into the public discourse. In places where prejudices exist about epilepsy, instead of embracing seizure detection devices, there’s likely to be indecisiveness to approach it. Not to mention the fact that buying such sophisticated devices (some of which begin at 20,000-30,000 INR), is next to impossible for many patients.
Monitoring mental health
According to Borthakur, who shared with me, “Unfortunately, most of the epilepsy research is conducted from the perspective of genetics, medicine or pharmaceutical sciences. It is not device driven—not yet at least—and it is mostly due to a lack of awareness.” Together with her team, she launched a separate device to examine a patient’s mental state—it’s a subset of the epilepsy device called Xaant. She says it is important to see the evolution of anxiety, the impact of medicine and underlying depression. “Epilepsy is a complex disorder determined by a range of factors—not all of which is hereditary. A great deal depends on how the brain responds to the cardio-respiratory system. With Xaant, we could explore that psychological triggers also bring about an attack at times,” she adds.
Borthakur’s glove, though commendable, couldn’t yet reach people who have poor facilities of healthcare. These relatively new developments do not necessarily mean that the stigmatisation of epilepsy patients in other spheres of life has come to an end. Think representations of epilepsy in popular films: Durga from Gangs of Wasseypur, and Radha from Choti Bahu comes to mind immediately. Though these films are from different periods, there’s a commonality–the myth that epilepsy is curable by marriage(read: sexual intercourse) comes up in both. I cannot go into the details of literary representations (Oliver Twist, Midnight’s Children etc) here but Peter Wolf writes, “Seizures may be introduced for dramatic effects, to create a sophisticated plot, or for mystery”. Why/Why not? All of this is worth exploring further in every context be it regional, national or global.
Healers vs medical science
Louise Fein writes, “The idea that the mind of the epileptic is itself depraved, the person unable to control his or her evil mind to the extent that the spirit must be exorcised or the person cast out and restrained in institutions to ensure the safety of the non-afflicted, persisted well into the second half of the 20th century”. Though most of her references are drawing from Biblical analogies, the point about reading epilepsy as entering the “uncanny” realm is the primary reason behind its superstitions.
One can cite many studies inside and outside of the northeastern region, where it has been found that local healers determine the ‘fate’ of a lot of patients who experience seizures in their lives. Seizures are typically seen as the stuff of “black magic”, “curse” “madness” and instead of making lives easy for the patients, it further stigmatises them. Even if it may not be as melodramatic as depicted in films and books, the treatment advised from these encounters range from “marriage” to casting “spells” to random “fertility advice” without any medical backing.
A faculty member of NIMHANS, G Gururaj reveals in “ Factors Associated with Utilisation of Services by Epilepsy Patients in Rural Areas – A Descriptive Study”, that about 28% of patients come in contact with traditional healers for a cure. He states, “This signifies the importance of health education in rural areas as this practice of self-medication can be extremely harmful…”. Before Rajlaxmi’s seizure detector glove, in 2015, an advanced magnetic ElectroEncephalography was installed in NIMHANS, the second of its kind to the installation at AIIMS. This device is far more efficient than MRI and it was even covered under the Karnataka CM’s relief fund for patients below the poverty line. It’s not clear how far this movement succeeded in removing stigmas in rural Karnataka.
Counselling and emotional support
Modern studies and neurologists point out that epilepsy is treatable, curable and manageable. The social aspect however curbs progress to a large extent, even though in the past decade due to the spread of mass media, things are improving. Mythili Hazarika, who is a clinical psychologist at Guwahati Medical College and Hospital(GMCH), shares, “Epilepsy with psychiatry comorbidities are very high so the stigma is double and myths about epilepsy are high. The medication is for a long time and that affects patients as they view themselves as handicapped individuals. This needs to be addressed with counselling and treatment from both neurologists and psychiatrists”.
Prof. Hazarika also commented that marriage cannot cure epilepsy— though, within domestic spaces, this myth is prevalent. She says, “Families hide and are reluctant for holistic treatment because of the social taboo. Many times, families of female patients hide this information from the groom for fear of rejection and then treatment becomes way more complicated. It has also been seen that hostile family comments trigger a lot of signs of depression. Suicidal tendencies are also high in epilepsy, it is a very sensitive situation”.
Prejudices about sexual and reproductive health
Dr Anirban Mahanta, a neurologist at the Guwahati Medical College, states that women and children suffer much more from epilepsy. “It affects men, women and children differently due to the social aspect,” he says. “The side-effects of epilepsy drugs can affect pregnancy–from the mother to the foetus. I guess the long persistent stereotypes (both visual and cognitive) about epilepsy are responsible for poor knowledge of the issue and its impact. Epilepsy is very diverse and can be subtle–same goes for treating it as well, newer approaches are required.”
Dr Mahanta informs that some kinds of epilepsy are not curable, not even by epileptic surgeries which have recently been very helpful. “But the problem is not that,” he says. “The problem is that we don’t know how to destigmatize the lives of patients and make their daily lives better. Besides, certain other medical conditions also need to be noted. Before prescribing popular drugs, all doctors need to be cognizant of this fact and the gender dynamic in place”, he adds.
((This story is published with the support of Laadli Media Fellowship of Population First, 2022. The writer is an independent researcher and tweets barman_rini.)
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