The Day My World Came Crashing Down
My name is Zahida and I am a Muslim of Pakistani heritage. Thirty years ago my father was diagnosed with terminal cancer and was given a few weeks to live. I was 17 at the time, suffice to say my whole world came crashing down around me.
Although it was a long time ago, I vividly recall being told not to tell anyone that my father had been diagnosed with cancer. Although I did as I was told at the time, I didn’t really understand why I was told this and put it down to the fact that it was terminal perhaps and that’s why I was told to keep quiet.
In 2011, however, I got diagnosed with cancer and again was told by my family not to tell anyone. I realised then that in some minority communities it is often an ‘an unwritten rule’ that an illness like cancer should be kept within the immediate family and that one should not be sharing or discussing their experiences with others. Some BAME people have even reported feeling that they were made to feel like they had somehow contributed to the cancer by doing something wrong in their life or for being a bad person and that this was some sort of punishment.
Even mentioning the word ‘cancer’ in some BAME backgrounds (which would include Muslims) is frowned upon to the point that even I started referring to it as the C-word in my household. Unfortunately, many patients and families from minority backgrounds simply avoid talking about cancer, most likely due to fear, stigma or sometimes ignorance.
Why does this even matter? Well, it does because despite equal access to the National Health Service, there are more inequalities in cancer morbidity and mortality amongst BAME people compared to any other racial and ethnic backgrounds, particularly white backgrounds. The taboo of cancer is one of the possible explanations as to the difference in experience amongst people from BAME Communities. It is possible that this stigma is what initially prevents people from BAME communities from seeking much-needed help. A report from the Macmillan Cancer Support showed that cancer awareness and help-seeking behaviours among BAME groups was the lowest across all minority ethnic groups.
I can tell you this from experience that a cancer diagnosis is hard in itself but to then be deprived of a familial and friendship support because of the taboo of cancer compounds the difficulties and challenges being faced even more by people from BAME backgrounds.
Unfortunately, cancer screening uptake within these communities across the U.K. is also lower than average. Cultural issues and language barriers can often compound uptake of screening. This is particularly true of certain cancers such as breast, uterine, ovarian and cervical cancers.
This can ultimately affect the services or the lack of services that are being provided to people from BAME backgrounds. I had experiences of this when I went to purchase a wig. I called a leading charity for details of wig outfitters as I thought I would get ahead of the game and get a wig before my hair started to fall out. The charity sent me a list of wig outfitters and I duly went along to the top supplier named by the charity. It was a lady who owned a small unit within a very large department store in London. I asked her to show me wigs but she kept showing me those that were not suitable for Asian hair types, being too thick or bulky for Asian hair which is usually fine and silky. When I asked her if she had anything suitable for Asian hair she snapped and said it’s a wig what are you expecting? If I’m honest, that incident really upset me, I wasn’t expecting a perfect match to my hair just something that didn’t set off warning signs to others that I was wearing a wig.
Anyway, I walked out of there feeling very despondent, luckily for me my sisters were with me and they jumped into action mode and said let’s try somewhere else. With a heavy heart I walked behind them around this big department store literally dragging my feet. Just by complete luck we came across a wig stall downstairs in the mall run by two black women. My sisters said let’s try here, I unwittingly complied but wasn’t expecting any joy, if I’m honest as the earlier experience left me really saddened and despondent and I was fighting back my tears. My sister explained to the lady that we were looking for a wig that was suitable for Asian people and the women said I think I have a few that I can show you. The first one she showed me sat perfectly on my head, it still felt like a wig but it felt more natural, more like my natural hair. She also advised that if I wanted to take some volume off I could have it thinned out at a hair salon, that might seem like an obvious point but for someone that has never worn a wig it was a light bulb moment. I can’t begin to tell you the happiness I experienced on finding a wig that was suitable for my hair type. It actually took out some of the pain out of being diagnosed with cancer as I felt that finding a wig closer to my hair type would allow me to have some sense of normality.
Now did that charity let me down by not having details of a wig outfitter that was suitable for a non- standard hair type? Absolutely they did! Organisations need to ensure that they are providing a service to people of all backgrounds and need to ensure that they serve the diverse needs of people from a cross section of backgrounds that they represent but they didn’t do this, why didn’t they do this? I think it’s because the awareness is not there of the disproportionate impact or lack of services for people from BAME backgrounds.
Unfortunately, the taboo of cancer in BAME communities goes beyond the lack of services referred to already and can also impact on the diagnosis. Late stage diagnosis for breast cancer in England is more common in Black African (25%) and Black Caribbean adults (22), compared to White British adults (13%), according to Public Health England’s 2016 statistics.
Since being diagnosed with cancer I have made it my personal mission to raise awareness of the taboo of cancer that exists in certain communities. Only by raising awareness can we stand a chance of breaking down the taboo and improving the detection and survival rates of people diagnosed with cancer from BAME backgrounds.
The more openly we talk about cancer and our experiences, the more likely it is that we can improve the situation for people in years to come. I am pleased to say that more and more people are coming forward to speak about this and it is gathering traction and raising awareness. I hope that through Safeena we can achieve even more of this.