As the saying goes, health is wealth. We are nothing without our health.
This year, I have had one of the most extraordinary experiences as a fit, young and active 29-year-old woman navigating my way through life and looking forward to the usual milestones: getting married; buying a house and the future.
As I moved around rented homes in south London in my 20s, I never went to the doctors. I rarely took sick days and would boast about my immunity to others while they coughed and spluttered as the latest virus did the rounds.
But after experiencing upper back pain and what appeared to be a swollen gland, I visited my GP for the second time in a year – just a few months after suffering a miscarriage – and I knew something wasn’t right.
Gut instinct goes a long way and I could tell something was wrong. But what I could never have guessed was the diagnosis.
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I had been experiencing fatigue but in this modern, fast-paced age, who isn’t fatigued? I ran two restaurants at the time, and was so excited and passionate about my daily projects that I was not conscious of my health and how it could possibly be deteriorating.
But the signs of lung cancer aren’t clear. As many as 40% of cases are diagnosed in A&E, a tragic number for a disease that is the third most common type of cancer, yet totally underfunded.
Lung cancer carries a lot of stigma. I find people asking me ‘Do you smoke?’ as if to justify my condition to themselves.
I dabbled with cigarettes in my 20s but I have physically not lived long enough for this disease to manifest and be staged so late. My cancer – stage four non-small-cell lung cancer – is incurable and the average age this disease occurs is between 70-74.
Being a daughter to Pakistani immigrants, I soon discovered more challenges on top of my terminal diagnosis – my mother didn’t know what cancer actually meant.
She arrived in the UK in 1987 and had four children in an arranged marriage that broke down when I was just 12 years old.
She was a Punjabi homemaker and never worked or integrated in general society, through no fault of her own. Her culture, background and the wishes of my father meant she never branched out.
Although she did have burning urges to contribute and educate herself, she did her best and raised me and my three sisters to the best of her ability.
Due to these factors, herself and many other south Asian people, women in particular, lack general health knowledge on diseases such as cancer.
She would not know what to look for, so when I attempted to explain my terminal diagnosis to her, it was like speaking different languages.
‘Beyta (daughter) you will get better’
‘No mum I have tumours, it’s incurable’
Over time, she has started to understand that I don’t have something simple like the flu.
I am currently under treatment but do not show or present any obvious signs of disease apart from the side effects.
That’s where the deeper understanding of my condition started to set in for her. I might seem fine on the face of it but I have subtle physical changes such as hair thinning and a skin rash from the targeted therapy drug afatinib that I take everyday.
It isn’t that my mother lacks education, she lacks integration and in her world, cancer is a very much the ’elephant in the room’ type chat. Only recently through my openness and willingness to talk about my diagnosis did I find out that a close relative of mine had multiple experiences with cancer. Her mother had breast cancer twice and her father died of bone cancer, not once were these circumstances brought up in family gatherings.
There is a level of shame when it comes to disease, a perception of immigrant failure comes to mind. During the early days of my diagnosis, I felt physically weak, and mentally I felt like I had failed in my lifelong efforts to level up to my white peers.
This is the reality of being an ethnic minority. You are faced with exceptional societal challenges on top of merely existing. This is why there is total lack of national conversation about illness in BAME communities. We want to appear to be ‘getting on’ with things, even when it all falls down and you are diagnosed with a life changing condition.
Further to immigrant shame, there is cultural shame. My conservative Pakistani background loosely believes that illness is destiny – God’s plan – so there is a level of reluctance to take ownership or steer a health plan to recover.
In turn, life saving conversations are lacking and people are unnecessarily dying from curable diseases in our communities.
In other cultures, illness is perceived to be the work of witchcraft or black magic so alternative healing methods are explored, which can be stressful and life threatening alongside conventional medicine.
There seems to be a complete nationwide blank on speaking out about BAME illness. I hope my story might act as some kind of catalyst to begin the conversation.
It’s time to break the cultural taboos around living with disease and what it means, because, after all, what are we without our health?
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