When Saroj Sethi was diagnosed with cancer she felt like her community shunned her. “Some of the ethnic minorities try to hold back their feelings from the family and the community, and it can lead to mental illness,” she said. “There have been a few patients who have had a very adverse reaction [from their family]. Some of them didn’t even tell their husband or children that they have got cancer”. It wasn’t the first time I had heard someone say this. A fellow trustee at the Asian and Middle Eastern Blood Cancer Trust, whose sister has been diagnosed with cancer, told me that older members of her community would refuse to say the word ‘cancer’, out of fear that it might bring them bad luck.
This led me to wonder – is cancer actually taboo in Muslim communities?
At first sight, some statistics appear to support the claim. Cervical screening rates are much lower in Muslim communities than they are in Caucasian communities. There are far fewer Muslims on the bone marrow and stem cell donation register than there are Caucasians (which actually gives Asians and Middle Easterners about 1/9th the chance of finding a suitable donor to cure their blood cancer) and research has shown that for some, “talking or even thinking about cancer could be inviting the disease to their lives” (that quote came from a Canadian study on Muslim women immigrants’ views on cervical screening).
My concern is that a Muslim’s unwillingness to discuss cancer is being attributed to them being Muslim. Privacy is not a uniquely Muslim desire, and nor is the comfort one gets from knowing that they are not exposed to the world at what might be their most vulnerable point in life.
“I would describe myself as a devout Muslim, my faith is important to me and shapes how I act”, Milad al Hilli says, who is a 24-year-old doctor from North West London. She describes herself as a “normal girl who loves clothes and fashion”, is training to be a GP, was recently engaged and was suddenly diagnosed with Hodgkins Lymphoma. Rather than keeping her story to herself, she has shared in incredible detail every step of her journey on her blog.
Muslim or not, many of us would understandably not want to share what might be our most vulnerable moments. Milad has no such qualms. She completely goes against the “taboo” narrative and openly describes how cancer is affecting her, even when she is told that she is not responding to chemotherapy:
‘The news comes as no real shock to me… when I developed the neck and chest pain with the difficulty swallowing I knew it was the cancer… yesterday I was telling my friends that I am 80% sure my scan would be bad news… when you reach the stage I have you know what cancer is… you know when you are sick… and I am sick..
All is not lost… I am still alive… the sun is still shining… I have my loved ones around me and a God which is compassionate…”
Her honesty on such a public and permanent platform is striking. At one point we see how cancer changes Milad’s perception of who she is. Like many Muslim girls, she describes her hair as her “crown”. She recounts looking at herself in the mirror for the first time as chemotherapy starts to slip her crown away:
“…I saw myself bald… I thought I would cry and be emotional… instead I smiled… I smiled because I felt a strength within me… they say a girls crown is her hair… but with or without hair I will always wear a crown of hope and positivity of my head… and that is priceless….
Being bald is beautiful… it’s beautiful because looking at myself in the mirror I see myself fully stripped back of anything that may beautify me externally… this is me raw… in a day and age where we are pressured to live a Instagram picture-perfect life, I stand boldly bald and confident… only I will determine what beautiful is.”
Milad is clearly not afraid of talking about her condition, and her blog is filled with an outpouring of support from the Muslim Iraqi community she grew up in. If there is genuinely a taboo around discussion of cancer in the Muslim community, how can we explain Milad’s story?
To me, the term “taboo” is simply a lazy way of saying that there are several underlying issues.
The Canadian study I mentioned earlier was of immigrant women who grew up with poor preventive health care in their countries of origin. In countries without a national cervical screening programme, the incidence of cervical cancer is up to 75% higher than in countries where such programmes exist(1). High-risk human papillomavirus infection among women with Pap smear test negative for intraepithelial lesions or malignancy(2). It’s, therefore, more understandable why the Canadian Muslims women studied would see cancer as a death sentence, rather than something that could be prevented or even cured. The “taboo” they experience may simply be a matter of miseducation due to socio-economic factors rather than pure religious belief.
Could this be what distinguishes Milad’s approach to cancer from the women in the study? She is a trained doctor who describes her patients as “my world, and giving them good care brings joy to me”. She would naturally have an awareness of the causes and consequences of cancer that most people would not. That familiarity surely means that she is less willing to resort to supernatural forces to explain it. So when The Guardian describes the discussion of cancer as taboo, what they could actually be describing is a simple lack of awareness. Without asking the specific community who shunned Saroj (in stark contrast to the community who embraced Milad) we will not know what the true cause of their attitude is. To ascribe it solely to “taboo” is to misconstrue the real reasons behind it the attitude, and lives will continue to be lost whilst those reasons remain misunderstood.
This is not to say that there isn’t a problem of superstition in the Muslim community or that there aren’t people who find cancer taboo. For example, research shows that Muslim women are less likely to have cervical screenings due to cervical cancer’s association with being sexually active. However, this conflates discussion of sex and discussion of cancer by suggesting that just because pre-marital sex is taboo then discussions of cervical cancer are also always taboo. Health awareness programmes can be and are tailored to the cultural sensitivities of different communities. The distinction is narrow but important; if we say that it’s a taboo it means it can’t be discussed, but if it’s a matter of cultural sensitivity then we can discuss the issue; we just have to be sensitive to people’s culture in the way that we do it.
Inspired by Milad, I want to end on a positive note. There are lots of organisations that help ethnic minority communities better understand medical issues of particular concern to them. Ours, the Asian and Middle Eastern Blood Cancer Trust, focuses on blood cancer and why it’s so important for our community to sign up to the Anthony Nolan register. The Centre for Islam and Medicine produces material for medical practitioners on the overlaps between Islam and medicine. The Ramadhan Health Awareness Campaign sets up screening and advice stalls in mosques around the country every Ramadhan. They are all run by volunteers who want to see BAME communities do more to help themselves. Indeed, your local GP or NHS foundation can also provide specialist materials and in different languages.
These are amazing organisations who are challenging the idea that the Muslim community is so frightened of major illness that we would resort to superstition to defend ourselves. However, they cannot spoon feed such a large and diverse community. As such we should each carry a little of this responsibility. It is incumbent on us not only to challenge the idea that we are superstitious and frightened, but to do so by better educating ourselves on how we can better protect our community from major illnesses.
- El Banna N, Al Eyd G, Saeed RS
- Int J of Med & Pub Health. 2014;4(1):102–6)