In some communities, cancer is a taboo subject and someone diagnosed with cancer may feel stigmatised. This article describes one woman’s personal experience.
I’m Iyna Butt, a Muslim, British Pakistani change-maker. I’m blessed to be a mum to a beautiful 12 year old boy with ADHD and Autism who teaches me how to be real every day, a wife (for the last ‘nearly’ 13 years), a daughter, a sister (to 5 other siblings), a HR & Talent Director, a life loving individual, a tea lover and I happened to have kicked cancer’s butt!
I was diagnosed with stage 3, grade 3 breast cancer at the age of 30 in 2015. With no family history or underlying health conditions, the diagnosis came as a complete shock. I had a 4 year old son at home and having to even think of him growing up without me was unimaginable and unbearable. I went through chemotherapy, surgery and then radiotherapy in 2015. I lost my hair after 10 days of starting chemotherapy, lost my eyebrows and lashes, gained two stone and felt I lost control.
In 2019, I was advised that I was a high risk candidate for ovarian cancer due to the type of breast cancer I had. During the pandemic in 2020, I had a hysterectomy which pushed me into a forced menopause at the age of 35! Let’s be honest! Cancer isn’t pretty, pink flashing lights and colourful. It’s hair loss, pain, severe fatigue, fear of death and so much more. It’s a difficult journey that is very lonely unless you are fortunate enough to have a “cancer sisterhood” around you (which isn’t available in all communities).
I knew this journey would test me to my core but what I didn’t realise was, that this journey for me as a Muslim, British, South Asian would be different, that I would need to protect myself and my energy, that my family would need to protect me, that it would be even harder than I imagined but it would also change my life for the better!
The fear, stigma, taboo and shame associated with cancer within the South Asian community holds people back from talking about their experiences, going to screenings and even doing their breast self-examination at home. People fear their daughters won’t get married if someone in the family has/had cancer, family members will judge, the male family members won’t support them or stick around and ultimately cancer is a death sentence. My parents and siblings heard all sorts from extended family and friends, “tell Iyna to wear a black bra and the cancer will go, she must have done something wrong in life, it’s a punishment from God, stop the treatment and just pray, it was in her “kismat” (fate)“. I could go on!
I opened an instagram page @iynabutt to share my journey, to raise the profile of breast cancer within the South Asian community, to raise awareness of the importance of self-examination and to create a space (that is culturally aligned) for “us” in the breast cancer campaign world. It’s so important for us all and more importantly, the Government, NHS, local authorities, charities and other services to play a key role in raising awareness and to remove barriers.
I hope my story can be a part of that change.
Authored by Iyna Butt and first published in the Future Dream Magazine 2022 edition.
Every month, Future Dreams hosts a South Asian Community Meet-Up. Join our next friendly, supportive session here. Future Dreams hold a range of support groups, classes, workshops and events to help you and your carers during your breast cancer diagnosis. These are held both online and in person at the London-based Future Dreams House. To see what’s on offer and to book your place, see here.
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This article was written by a guest author based on their own experience of breast cancer and its treatment. It is important to note that this is one person’s experience and that whilst there may be commonalities between the experiences of different people, everyone has a different diagnosis/treatment plan/general experience. The information and content provided in all guest articles is intended for information and educational purposes only and is not intended to substitute for professional medical advice. It is important that all personalised care decisions should be made by your medical team. Please contact your medical team for advice on anything covered in this article and/or in relation to your personal situation. Please note that unless otherwise stated, Future Dreams has no affiliation to the guest author of this article and he/she/they have not been paid to write this article. There may be alternative options/products/information available which we encourage you to research when making decisions about treatment and support.
Sylvie and Danielle began Future Dreams with just £100 in 2008. They believed nobody should face breast cancer alone. Their legacy lives on in Future Dreams House. We couldn’t continue to fund support services for those touched by breast cancer, raise awareness of breast cancer and promote early diagnosis and advance research into secondary breast cancer without your help. Please consider partnering with us or making a donation.