Use of biomedicine
Not surprisingly, given their recruitment through medical records, all those interviewed were taking conventional anti-epileptic drugs for their epilepsy, although some (15) admitted to having stopped for brief periods in the past or to having altered the recommended dose.
I will have a fit if I'm still taking my tablet but, if I miss a tablet, I'm still going to have a fit. If I miss the tablet, I might not have a fit, you don't know. It's one of these things, it'll just come up from nowhere.
(Amjad, 25 year old Muslim man)
I was sick of taking tablets. I just thought I'd be my own doctor, basically. I thought, 'Well I have not had a fit for a very long time, I think it's gone away you know.' It's like, yes, it's finished, let's come off the tablets slowly.... I did have a quite bad fit.
(Sara, 34 year old Muslim woman)
The main reasons for stopping or altering the dose were: side-effects (such as headaches, loss of short-term memory, weight gain, impotence, stomach problems and general tiredness); fear of accumulated toxicity in the body; fear of harm to the unborn baby during pregnancy. Asifa was one of two women who had decided to stop taking medication for epilepsy during pregnancy.
No one knew about it. ... I was having cluster fits and the medication was put up and up and up. I was really scared that there would be some effect on the baby. I just thought, "I'm having the fits anyway, I'll have them but at least I won't be taking the tablets; the tablets won't be doing anything to the baby even if the fits are."
(Asifa, 28 year old Muslim woman)
In common with other young people with chronic illness, some participants, particularly if they had been diagnosed at a young age, went through a period in their adolescence when they stopped taking tablets [35–38].
When I was at that age, fifteen, I used to (take medication). It wasn't that I never understood properly, like if I had a headache you take a tablet, it goes away. I used to take the medication but I still used to have fits. In my head, I used to think 'What's the point of eating tablets?' so I stopped.
(Razia, 31 year old Muslim woman)
For many people, however, especially those who had experienced symptoms before coming to Britain, there had been a delay in diagnosis where help had initially been sought in the folk sector. As the brother of Iqbal (35 year old Muslim man) explained:
Magic, you know how it is in India, in Pakistan and Africa and everywhere. Yes, we thought it was the outside job and he went to see a lot of priests, different things, at first. He didn't know what it was.
Use of complementary and alternative medicine
Unlike other studies which have revealed significant proportions of people with epilepsy using CAM, both for general health purposes and specifically for epilepsy [8–12], only two people mentioned a non-South Asian alternative. One had tried acupuncture, apparently without much success. Another, uniquely in our sample, had tried a number of complementary therapies, including psychotherapy, hypnotherapy, reiki and aromatherapy. Although his views about the benefits of using alternatives were mixed, he was opposed to trying any kind of remedy proposed by a traditional South Asian healer:
They (parents) have tried to (persuade me) but I just know I don't want to see any of these people (traditional healers). No, because it's just superstition... I'd rather do it my own way. I did use aromatherapy. That helped with sleeping and relaxing me and I tried reiki as well..... Reiki was through my brother and aromatherapy, his partner. She has books and things on it, so I just borrowed a book and read that.... I just tried it to see how it would help me..... I've tried some things like how to become stress-free and things but I don't feel it really works.
(Sachdev, 19 year old Sikh man)
Use of traditional South Asian therapies
Despite high levels of compliance with western medication, the use of traditional South Asian therapies was widespread in our sample, although in all cases as a second-line rather than an alternative to anti-epileptic drugs. Given recruitment of the sample 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. Initially, participants were often reluctant to talk about the use of ethnomedicine, even with interviewers who were themselves of South Asian origin, and no-one reported having discussed it with their doctor.
Over half the sample (16 people) said that they had sought help from hakims, practising mainly within the Yunani tradition [39], or from other traditional South Asian healers. Fourteen people said that they had visited a faith healer. Some of these consultations were with gurus (Hindus and Sikhs) or pirs (Muslims), visiting from the Indian subcontinent, although some people consulted local healers on trips abroad when visiting extended family. Others consulted religious healers established in the UK, often affiliated to famous pirs from the subcontinent, on the recommendation of friends or family.
Decisions to seek alternative treatments were usually taken as a family rather than as an individual and people reported having been coerced or cajoled into accepting them, especially on visits to India or Pakistan where there was additional pressure from the wider family and community. One man, for example, remembered how:
My mum forced me, saying, "You have to go, you try it there. What are you going to lose if you go there?" and I had to accept those things.
(Yaqoob, 39 year old Muslim man)
Similarly, another recalled:
(I went to a faith healer) just to please them (my parents), really. They were saying that, not only my parents, it was like far off cousins or my uncles, they would say, "You should go. Someone went, he got better, and why don't you take your son?"
(Banares, 27 year old Muslim man)
Discrepancy between participants' reasons for accepting traditional treatments and families' motivations was commonly reported and was usually related to differences in beliefs about the causes of epilepsy. The older generation were reported to be more likely to believe in supernatural causes, such as the Evil Eye, tawiz (amulets, containing verses of the Holy Quran, intended to harm someone), or possession by mischievous demons or jinn [40, 41]. As the husband of Asifa pointed out:
They (the elders) think it's something like an evil spirit, I would say that's the elders, no matter where they are.
Younger people were more likely to accept a medical explanation for their condition or to attribute it to stress, past trauma and "the will of God". Yaqoob, for example, said:
Most people think like that that they are
djinns
(demons) and want to give you
tawiz
(amulet containing religious verses) or something like that.... It's a disease, it's not ghost. It's a disease, it's not a ghost giving me trouble. If it's a ghost, it could kill me a long time ago.
(Yaqoob, 39 year old Muslim man)
Similarly, Sikh and Hindu respondents were unlikely to subscribe to the notion of punishment for sins committed in a past life. Bhupinder, for example, commented:
They do say that you have to repent in this life for sins that you've maybe committed in your previous life, but I don't know... I mean illness is something that's fated to happen to you in life. I think I was just fated to have it.
(Bhupinder, 46 year old Sikh woman)
Likewise, Sachdev, who was diagnosed at the age of 12, recalled:
I remember (my parents) having conversation with some guru of theirs and he was saying that in a previous life ...I'd killed a snake or something, that's why I'm epileptic... but I don't really believe in this sort of thing.
(Sachdev, 19 year old Sikh man)
Older relatives were likely to consider biomedicine inferior to traditional approaches with their strong religious foundation. The father of Shazad (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.... I think the hakim's cure is better, the cure is from Allah and both are ways of accessing the cure.
Similarly, Saleem recounted a conversation with his father after visiting a doctor. Previously, he had visited a pir, visiting from Pakistan, who had diagnosed the problem as saya (literally meaning 'shadow' – the belief that some evil spirit or individual has cast his or her shadow on the patient [41]) and given him some verses to read in Farsi.
Me and Dad went to Dr X a few months later. He showed us a circuit board and he said these wires touch and connect. Afterwards, when we came back home, Dad said "
Allah ne bandyi
" (
Pir
was a person close to God and not everyone is blessed with these powers), you know, he said "Not everyone has that."
(Saleem, 32 year old Muslim man)
Amongst participants, the widespread use of traditional therapies was not necessarily or even primarily related to belief in their efficacy. Participants turned to alternatives for a number of reasons. Some were persuaded by family, friends or relatives; others were concerned about side-effects, especially the effects on their health of long-term use of anti-epilepsy drugs. Some, mirroring their approach to anti-epileptic drugs, had adopted an experimental tactic. One woman, for example, had tried both herbal remedies prescribed by hakims and religious remedies, but was sceptical of their benefit:
I also went to see the hakims. People that give prayers to read to get better, I went to see them too. 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 (hakim's prescribed medication) 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?"
(Shanaz, 28 year old Muslim woman)
Similarly, Mohammed had stopped wearing tawiz because he felt they hadn't helped him.
I had a couple sent (from Pakistan) a couple of years ago... Got it from M (a pir in Pakistan)... But when I have these attacks, I just have these doubts, again... Then, after two or three 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.
(Mohammed, 24 year old Muslim man)
However, a common motivating factor, regardless of age, religion or ethnicity, was the desire for a cure or reduction in seizures that conventional medication had failed to provide. All those who had sought additional treatment had experienced continued seizures, despite compliance with medication [42], and many gave a sense of desperation as their main motivation.
We've been asking all those sorts of people but nobody can come up with any answer. They've tried their best ... but nothing... I think it is desperation because, you know, you've been trying something for so long and it's not getting you anywhere... I don't care as long as it helps me. Anything, I was willing to do anything.
(Santosh, 42 year old Hindu man)
I've had people giving me
tawiz
, 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.
(Razia, (31 year old Muslim woman)
One person had even sought help from a healer of a different religion:
We 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 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 or what religion they are.
(Sara, 34 year old Muslim woman)
In line with findings from studies conducted in India [40, 43] and Pakistan [44], participants expressed considerable scepticism about the efficacy and authenticity of both the treatments and their practitioners but were willing to go along with them out of a sense of desperation or to please their families. However, some had refused to follow the healers' instructions. Khalida, for example, recounted an occasion when her mother had taken her to consult a pir.
It was in Pakistan. The
pir
, I don't know what he did and, after that, he said "Can you open your mouth?" and I said, "Why?" because he wanted to spit in my mouth. I said "No, I won't". My mother said, "You must obey" I said "I don't think so." Yeah, it's our people, they believe in these things. I don't believe.
(Khalida, 56 year old Muslim woman)
Others had simply refused to see them. Asifa, for example, had refused to see a religious healer even though her family had insisted:
Someone once suggested, I think it was in the family, you know, some
peer sahib
is really good, he will do some
dua
(recite prayers) or something... but I don't really believe in that stuff.
(Asifa, 28 year old Muslim woman)
Others refused to wear the tawiz (amulet) they had been given.
We've got this other one (
pir
) who comes to your house... That's what our lot believe in. He's all right, he gives
tawiz
and recites from the Koran, still our faith. I've never worn them (
tawiz
), don't believe in them.
(Amjad, 25 year old Muslim man)
Some questioned the authenticity of practitioners, believing many to be charlatans or quacks.
I mean, I'm sure there are many true people out there but they're difficult to find, aren't they? So, most of them are just quacks basically, so... I don't believe in that stuff.
(Asifa, 28 year old Muslim woman)
(My aunt) has been to these
pirs, fakirs
whatever you want to call them, one in Pakistan that helped her, she's been to see all of them. But half of them are conmen, you know that. They go round taking money off you.
(Amjad, 25 year old Muslim man)
Muslims queried the role of the pir as an intermediary with God [45, 46]. One woman, for example, said:
I don't believe in
pir
. Okay, you respect them because maybe they know bit more than you. I am a
pir
as well, I'm God's human being, why won't he listen to
me
? Why should I go to another person to tell my problems? You pray to God. Why can't I pray myself?
(Khalida, 56 year old Muslim woman)
Others were ambivalent about the wearing of tawiz and other magico-religious practices that were perceived to run counter to Islamic orthodoxy [47] and were associated with the "superstitious" village culture of rural Pakistan. A young man explained:
(W)hatever God plans, he's the best of all plans and I can't, can't go to someone and say, 'Give me a
tawiz
and make me feel better.' If I'm going to get better, then God will make me better. (I went) just to please them (parents) really.
(Banares, 27 year old Muslim man)