Reproductive health affects men and women; however, women bear the strain of reproductive illness due to a wider social, economic and political disadvantage. Since the age of 18, Neelam Heera; a freelancer in reproductive and mental health has been suffering from polycystic ovary syndrome (PCOS) and endometriosis. PCOS is a common condition which affects how a woman's ovaries work, with endometriosis being a long-term condition where tissues similar to the lining of the womb grows in other places such as the fallopian tubes. According to Endometriosis UK, 1 in 10 women of reproductive age in the UK suffer from endometriosis and is the second most common gynaecological condition in the UK. Neelam worked in the legal field for 10 years as a paralegal before taking the decision to leave and work in the charity sector. Now, she is the founder of charity Cysters to provide education and awareness around reproductive health conditions. Originally from Huddersfield, Neelam was diagnosed whilst she was studying in Birmingham; however, her family support was positive where she felt she could talk about her issues openly. "My mum used to be a school nurse and worked in midwifery, so she knew what it was and actually suspected I had it before the official diagnosis." "I was having irregular periods, gaining weight around my middle and was getting hair growth around my chin area." With Neelam's mum being from a medical professional background, they took the diagnosis well and imposed healthy routines for Neelam. "I sort of rebelled against the healthy routine as I felt I wasn't leaving a normal life as I didn't understand what the conditions were and what was wrong with me." Neelam's immediate family was supportive; however, extended members of her family were not. "Wider members of my family were shocked to know that I was taking the contraceptive pill to manage my PCOS because they thought the pill made me sexually promiscuous." "It's interesting that my immediate family were supportive, yet the external wider family had different views based on the medication I was taking." In 2015, Neelam founded Cysters to help minority groups have a space for open conversation on reproductive health. Cysters started out as a social page for Neelam to express her frustrations of her diagnosis, which grew into a support group for women with similar experiences. "We offer peer to peer support via online forums like Facebook and also in person; there's a lot of laughter and tears, and people generally get things off their chest." "We also do a lot of work around period poverty, supporting young girls and young people that have periods generally." Plan International UK is a charity that helps to promote children's rights and equality around the world; securing them a better future. According to a 2018 research study by Plan International, every month 40% of young girls have had to use toilet roll as they cannot afford proper sanitary products. "In the Birmingham and West Midlands area, we offer access to menstrual products and access to education on how to use the products, what to use them for and what to do when there's a problem," Neelam said. Claire Henson runs The Free Period, a small community organisation that collects period products for women across Nottinghamshire. "Period poverty is a hard issue to tackle due to a reluctance or embarrassment around it, so we need to continue breaking down the barriers." A 2019 Birmingham City Council report on period poverty and awareness showed that certain faiths, traditions and cultures have beliefs around menstruation. People are taught from an early age that menstruation is dirty, purity is a concern and women shouldn't be allowed in the kitchen whilst on their cycle. Claire donates to local organisations across the county and by having a presence at local events and venues, she is able to raise awareness of period poverty. "Progress has been made with the recent law providing all schools with period products, which is down to the hard work of period poverty campaigners such as Amika George." "We must continue to raise the issue of period poverty using social media, sharing articles online and supporting organisations fighting period poverty." Cysters values relate to community, collaboration and care; however, Neelam expressed that sisterhood within this space is vital. "Cysters isn't about my journey, it's about everybody's journey for people to have their own narrative." 'If you look and research these conditions, they're usually taken up by the same sort of voices which promote white values and don't take into account cultural needs of people with reproductive issues from BAME backgrounds." "Sisterhood is an important part of the work we do as it's inclusive and we can learn and educate each other on cultural awareness too." Reproductive illness can also affect people's mental health, with BAME communities likely to be disadvantaged in accessing forms of support, according to a 2017 report by the West Midlands Mental Health Commission. Dr Aderemi Adedokun who works in Kilkenny Mental health services in Republic of Ireland, explained that less access is due to stigma including individual and societal challenges. "Different ethnic groups have mental health issues which reflect their culture and background, due to mental health problems are almost seen as taboo and perceived in a negative light." "This discourages people within the community from talking about their mental health and may be a barrier to engage with health services." Neelam said that reproductive illness brings a lot of pain which impacts daily life. "You're in pain everyday so you will get some sort of health anxieties which is triggered and can have a massive impact on your life." "We see this when women give birth and in postpartum depression and these things aren't spoken about." Dr Adedokum says that sexual and reproductive health correlate. "It's difficult not to link reproductive health and sexual health as changes in hormones during pregnancy and menstrual cycles have been seen to cause mental illness in women." "Getting a diagnosis of endometriosis and trying to get pregnant or give birth are not rare, the aforementioned diagnosis only makes it more difficult and increases the risk of complications." Neelam says that women are stereotyped to do certain things chronologically in their life. "Due to levels of misogany and patriarchy, women are still seen as by certain age, you need to be married and have children; however if you've got reproductive health conditions, that can make the journey difficult, resulting in not opening up on the struggles." Neelam wants minority voices to be heard; however, explains the spaces that are currently there are predominately white dominated. "We have to push ourselves to the table to make room for other people to come forward and we find minorities don't always want to come forward themselves." In September 2019, Neelam did a Ted Talk on challenging people's concepts on misogynistic norms; one of them being virginity. "There are various views on why most people think that virginity is linked to a woman's worth and it's mostly down to men policing women's bodies." "When a women does it, her worth is determined as she gets slut-shamed or gets called a whore, but when a man does it, he gets privilege and becomes one of the lads." Within BAME communities, there is still a lack of education. Speaking to The Metro, Sharan Dhaliwal, editor of South Asian lifestyle magazine, Burnt Roti believes that sex carries a stigma due to female liberation." ‘That lack of confidence is within the British education system itself, which doesn’t open the dialogue with first generation immigrants, so they are unable to understand that the dialogue needs to continue with their children." ‘The fault lies in the education back home too – if they weren’t taught it at school because of the stigma applied on a woman’s liberation, then they won’t be open to it.’ "I think it's important that we have open conversations about what is a healthy relationship, what is sex and what is protection so women can make informed choices," Neelam said. Neelam received a lot of negativity after her Ted Talk, which she knew was down to lack of education. "If you give someone the tools via knowledge, awareness and education, then you actively promote sexual promiscuity." "What we are actually doing is giving someone the tools to have consent, as it's vital to create better and healthier relationships for both parties." Despite the negativity, Neelam has been recognised for her work tackling these hard-hitting issues; one of them being from the former Prime Minister Theresa May.
She received a Point of Light award, which honours people who are making great changes within their communities. "When I got the Point of Light, I was taken aback as I didn't think as an organisation, we would be recognised for the work we do as I didn't think it was that groundbreaking." In a personal letter to Neelam, the former Prime Minister said: "Your work founding ‘Cysters’ is giving women from Asian backgrounds a safe space to discuss their experiences of struggling with gynaecological health issues. You should feel tremendously proud of breaking down cultural taboos to ensure women can access emotional support and vital medical treatment.” "I just felt people needed to know the knowledge I know and what the people around me and medical professionals know, so having that recognition showed the work at Cysters was good and our charity continued to grow after that." Neelam stills wants certain cultural barriers to be broken in order to reduce discrimination in healthcare. "We can't expect the future generations to pop out babies because we want them to and carry the family on, we need to understand what it means; what are these conditions, what can we do for these conditions and how can we make them better." In terms of Cysters, Neelam wants her charity to develop, but also be something that can live on. "The next steps for Cysters is to grow, I want everybody to have heard about the work we do; ideally if Cysters could close down as an organisation because everybody in the world knows about reproductive health and is making informed decisions, that would be the goal." For more information and support on reproductive health visit: Cysters Care International Information on period poverty: Action Aid Freedom4girls The Free Period Nottingham
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AuthorPriyanka Patel - Editor for AURA Archives
September 2020
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