We found that many of our responders believed that they had been fated by God to suffer from epilepsy. This was particularly, but not exclusively, true for Muslim patients. The following comments were typical:
The belief that illness may be a punishment for sins committed in a past life is part of the doctrine of Hinduism and Sikhism. We found some evidence of this belief in our sample:
Medical knowledge did not necessarily preclude belief in jinn, as the following comments from a Hindu woman, who had herself been medically trained, demonstrate:
Belief that epilepsy is a contagious disease was experienced by responders through the negative attitudes and actions of other community members, as a 29-year-old Muslim woman explained:
Traditional South Asian therapies
We found that the use of traditional South Asian therapies (as outlined in Supplementary Appendix 1) was widespread in our sample, although in all cases it was a second-line treatment rather than an alternative to anti-epileptic drugs. However, as our sample was accessed through medical records, we have no knowledge of the extent to which people with epilepsy may have been using traditional therapies without being in contact with medical services.
Sixteen of the 30 people from our sample who had epilepsy had sought help from traditional South Asian healers. A common reason for using these therapies was desperation and each individual's hope that he or she might find a cure or effective treatment for their seizures:
‘I think it is desperation because, you know, you've been trying something for so long and it's not getting you anywhere, I suppose it is. I don't care as long as it helps me. Anything, I was willing to do anything. I'd try anything to cure the problem but the only answer was these tablets. No more.’ (42-year-old Hindu male.)
‘I was really tired, sick of it, nothing was helping and I'm suffering. I'll do anything to get better. They [amulets] helped me, I believe in it, they helped me, but I think the medication the doctor writes … you should always go for the medication.’ (31-year-old Muslim female.)
‘[W]e must have tried nearly everything, anybody that said, you know, try this for epilepsy, it's like go an Islamic way going beyond it. It's like, you know, something you wouldn't do, you know. My family is quite religious and sometimes we actually went to this [Hindu healer]. There's nothing wrong with that but I suppose, you know, when you've got, your child, you're helpless, you don't know what to do, you run to everyone, you don't care who you're going to and what religion they are.’ (34-year-old Muslim female.)
All those who had used other therapies had experienced continued seizures, despite compliance with medical regimens. Some people were persuaded to use them by family or friends, often when visiting India or Pakistan, while others looked for alternative treatments as they were suspicious about the effects of long-term antiepileptic drugs on their physical or mental health.
Most of our sample, irrespective of ethnicity, used some form of religious healing. For some, this was a personal prayer or recitation from religious texts in private, rather than seeking help from religious healers. Others undertook pilgrimages to places of worship in order to seek forgiveness for their sins and alleviation of their illness. Fourteen responders turned to religious healers, usually under pressure from their families or in an attempt to placate them, as illustrated in the following examples:
‘Pir came from Pakistan and he was 100 years old or something, came with a long white beard. He made me read something in Farsi. It's like Arabic, couldn't understand it, I read it, yeah. He said to me “Understand it?” I said “Alright”. My dad read it and he said “I understand it”, he gave me something, told my mum downstairs “It's like a sayaa [influence of a evil spirit] when he was born”, he said “naraa [veins] in his head, which collapses”.’ (32-year-old Muslim male.)
‘People (pirs) came from Pakistan here and I went there once, I remember, in Bradford and he said, “I'm gonna do something”. I don't know what they were doing…’ (39-year-old Muslim male.)
‘My parents sent this [taweez, amulet] from Pakistan. I had a couple sent a couple of years ago and they've been helping as well. Got it from [pir in Pakistan]. I think it does [work] but when I have these attacks I just have these doubts, again. I had these taweez; I had to wear them on my arm, one on each, one on my left and one on my right. Then after 2 or 3 years I was in that previous state when I used to keep on having fits again and again. I thought they weren't working so I just took them off, just stopped using them. Yeah, I told them [family] that I took them off but I have the arm ones.’
[Asked if the family objected]: ‘No, because I got some more taweez they said, “Here, wear these new ones”. Wearing the taweez I think does help a lot, not me myself personally but my family think that's one of the reasons that's helped me a lot.’ (24-year-old Muslim male.)
Many of these consultations were with gurus (Hindus and Sikhs) or pirs (Muslims) visiting from the Indian subcontinent, although some responders took advantage of trips abroad, when visiting family, to consult with local, well-known healers. Others consulted religious healers established in the UK, often affiliated to famous pirs from the Indian subcontinent. Most of the Muslim sample who had consulted with pirs were instructed to wear some kind of amulet containing verses from the Koran (taweez), usually around the neck or the arm. Others were required to drink blessed water or recite from holy texts:
‘I've had people giving me taweez, all sorts, I've been … I don't know, people say different things, “You should do this, you should do that”. I've tried everything. I was having it [seizures] and actually there was this lady who was giving me taweez and I went better for 1 year I didn't have a fit. This taweez and she put dam on water [blessed the water], she used to give me that.’ (31-year-old Muslim female.)
Five responders visited hakims (herbal practitioners) in the hope of finding a cure for their epilepsy. A number of hakims practised in the district, often advertising consultations or mail order treatments through newspapers for minority ethnic groups. However, the majority of people made use of hakims while on trips to visit relatives in India/Pakistan, primarily because of the difficulties of locating practitioners and the prohibitive costs involved in consulting locally in the UK. A 23-year-old Muslim man explained:
‘In this country people usually go to the doctor first, because it's free and the hakim charges money. In Pakistan, however, the hakim is cheaper than the doctor. Here, we pay for the hakim in pounds; over there [in Pakistan], we pay in rupees. I think the hakim's cure is better, the cure is from Allah and both are ways of accessing the cure.’
Younger people, in particular, expressed considerable scepticism about the effectiveness of such healers. A 28-year-old Muslim woman, for example, said:
‘I also went to see the hakims, I tried everything, people that give like prayers to read, to get better, I went to see them. So what I did was I tried everything and sometimes I'd feel better, sometimes I wouldn't, but, I mean, they say it's kind of psychological as well. Well, you know you take it [herbal medication] for … you take it and you don't have any fits for a week and then the next week you'll have three and you think, what was the point of taking that, it hasn't made any difference.’
Most of them were persuaded or coerced by their families into seeking this kind of treatment. Some were reluctant to follow instructions prescribed by healers as they were a little sceptical as to how much they would benefit.
‘We've been asking all those sorts of people but nobody can come up with any answer. They've tried their best, but if anybody does know … but nothing. Well, they just said it comes from, some say it comes from the ancestors, old ancestors or somebody who's not a good psychic person or something. One of them, I overheard, will say that when I was born. Over in India, one or two of them did say that it could be to do with black magic, but I don't believe that stuff.’ (42-year-old Hindu male.)
‘Someone once suggested, I think it was in the family, you know, some pir sahib is really good, he will do some dua [recite prayers] or something … but I don't really believe in that stuff. I mean, I'm sure there are many true people out there but they're difficult to find, aren't they?’ (28-year-old Muslim female.)
‘I went to this … we've got this other one who goes to your house Pir Sahib, they call him. That's what our lot believe in; he's all right, he gives taweez [amulets] and reads [recites from the Koran], still our faith. I've never worn them [taweez], don't believe in them.’ (25-year-old Muslim male.)
Five responders, however, did report improvements to their condition. It is possible that such ‘improvements’ coincided with periods of stability that were seizure-free, although some responders explained this in terms of the power of belief and the calming influence of recitation and prayer in reducing the stress that could provoke seizures.
There was very little overlap with more mainstream complementary therapies used by the white population:12 only two people reported using a non-South Asian alternative — Reiki and a Chinese herbalist.
