Who is Neelam?
Well, I was once described as resourceful! Which I didn’t understand till recently. Everything I do, I do without any financial backing. I’ve always made things work without money. I have pulled in on my resources as they say. I’m always tired (laughing) as I do too much all the time. I’m genuinely very passionate with anything I attach my name too. Anything I want to I throw myself into it. This can be my downfall also in my legal career and with Cysters. Also, I am very loyal. I am loyal with friends and family which Ceese you know that when you are in my circle it means everything.
What’s your day job and why did you choose that career?
I am a paralegal specialising in Injuries. I also deal with brain injuries, car crashes that had a serious impact. I work for FBC Manby Bowdler. I work under Sue Todd Hunter she is one of the most amazing people I have ever met. She is really really good at her job and she has trained me up. I want to qualify as a solicitor. Hopefully, with this firm, I will. I have been working in the legal firm since I was 20 years old and I’m 28 years old now. I seriously I have never thought of any other career I have wanted to do. Other people may say I wish I had done this with my career. But for me, it was always Law. It’s all about Justice. It was actually because of my mum she used to go to court a lot. She would do court hearings, with children and adolescents. How their mental health was being affected or how things are at home. My mother is a clinical nurse psychiatrist. As my mother was always in court I found it all so interesting. I was pulled into politics at a young age, which was really weird. I was a youth representative for Parliament for Huddersfield! When I was like 16 years old and I was always into charity work. I used to go into schools and promote the non-smoking issues before it was banned in public spaces. They were going through the law change at that point. I like doing things for people. I’m a proper geek. If I know what I’m talking about I will run with it. I will fight tooth and nail. Even whilst at school, I chose all the subjects from the legal field. I did all my work experiences also. I really enjoy it. Whilst at University I set up a group called STAR Student Action for Refugees, I was president for that. It’s set up in London. It was set up originally in Leicester. It was Immigration law which is naturally what I wanted to do. Also, I was the president of Amnesty International in Leicester in 2007-2010. Everything I did was in regards to Immigration. I did work for a firm in Coventry and I did that 4 years and I know Immigration like the back of my hand. I decided to do personal injury claim. Now everyone thinks it’s just road traffic collisions but it’s much more than that. Or the fake traffic collisions. I wanted to experience all different parts of the law. So I started to do holiday claims, sickness abroad and accidents abroad with Irwin Mitchell. I left there now a year ago and that was also due to my gynaecological issues. I set up Cysters to build more foundations for Cysters.
You are also a columnist for Eastern Eye, Asian Today and The Phoenix, aren’t you?
Yes but on and off now whenever I get the chance. But my regular one is with The Phoenix and Asian Today. I do one every month. Eastern Eye I did my most popular article with Dame Esther Rantzen. She is the founder of Childline and I used to sit on the board on NSPCC and I brought her to the Irwin Mitchell offices to interview her. To talk about the problems that the Asian community is having in regards to sexual exploitation and grooming. One thing Dame Esther Rantzen stated was she has never been able to talk to a BME forum before as she has never been allowed too. My interview was the first one and it was a big thing and it was shared internationally. It was a great article and this was through Eastern Eye. I have a Cysters chat column with the Phoenix. I try and theme it to each month. It isn’t what people talk about so it’s important to get the message out. I will start doing more awareness articles soon.
Now I actually read and bearing in mind we have been friends forever, you have qualifications in singing, playing the piano and cornet! Tell me more
Yes! I also play the guitar. I went to a music school when I was growing up. I learnt to play and singing in choirs I used to love all that. I went to drama school. It was part of what the schools did. We sang at the Royal Albert Hall in London. This was amazing. I have been abroad singing. Also, I was part of a brass band! I told you I was geeky! I don’t know why I chose the cornet but it was cool at the time and I learnt to love it. The piano I loved also. Since I came to Birmingham I don’t play. My instruments are in Huddersfield. So all I can do is sing in the shower! (laughing) My piano is really sentimental it was given to me by a man who kind of brought me up and he wasn’t the typical Indian neighbour. He was actually German. I don’t come from a typical Asian background. His name is Fritz and his wife and he’s passed away, unfortunately. I spent all my childhood there. Fritz did my childcare. Also, he encouraged me to play music and the piano is mahogany and when he passed away it was very hard. As people have their grandparents who bring them up but I didn’t have that. That’s why I have a different view on things!
People know you as you have started a support group called Cysters can you tell me a bit more about what it is and what it stands for, for anyone who hasn’t heard of it?
I started it in a different way and spelt it in a different way. It’s called that because I have a cyst on my ovary and that’s where the name came from. So I turned that into a sisterhood of people. I envisioned people supporting each other through gynaecological issues. When I first started it was for the Polycystic Ovary Syndrome, Endometriosis and a cyst as that’s what I suffer with. The more I looked into it there was an issue culturally, socially and medically around women’s intimate health. Also reproductive health. I started Cysters as a social media movement to highlight the issues surrounding women’s reproductive and gynaecological health. The more I openly spoke about these prevalent issued the more excluded and ostracised I became.
The idea behind Cysters was too ensure that when a woman is diagnosed or tell intimate health issues they would be safe in the knowledge they can join a Cysterhood/Sisterhood of women battling similar issues and helping each other through it.
I chose the name as I have an Ovarian Cyst.. and I turned this negative in my life into something I’ve always wanted. A Cyster/ sister group, therefore, it became Cysters.
So the 4 main strands for Cysters are:
Support and Awareness (like in the name)
We do an online support group that is private you can only access by me.
Nutrition and Diet
They are fantastic we have people in the group who are qualified and can help with this.
Then looking at Mental Health Aspect as not many people know or realise how much it can affect you when are in constant pain. Or having miscarriages or chronic pain. As you learnt today sitting in on the Cysters chat. We have that support network.
People hear the word vagina and assume it’s about sex and its nothing like that. It’s trying to get rid of the negativity around the subject area. It is a taboo subject as people don’t understand that. It’s what people think and men banning women from the village if they were on their period. That’s what we are up against! That mindset is brought into the 21st century!
Why did you set up the charity?
I set it up when I was angry! (laughing) When I was Ill, and the doctors were discussing options with me. I was told you are not in a relationship so a Hysterectomy was my option. At that time all this information is hitting you at once is very scary and daunting. It felt like my life was over. It probably wasn’t as harsh as it sounded from the doctor. But I didn’t have anyone else around me. I was on my own I was only 23. I felt that women needed to be supported more and more awareness and support should be provided. I needed that and I didn’t have that. So that’s why I set up Cysters.
You suffer from Endometriosis and Polycystic Ovarian Syndrome can you explain what that is?
So I was first was diagnosed with PCOS at 18 whilst at university. However. I knew I was having reproductive health problems before then. But I had no one to ask. My periods had stopped for the most 2 years before I plucked up the courage to speak to a GP. I had hair loss, acne and grew facial fair. I had menstrual cramps like no other but no cycle. My diagnosis day was horrific, the doctor treated it as if it was nothing and gave me a Google print of the definition of PCOS. Because the doctor placed no real importance on it.. neither did i.
I still suffered from pain and hair loss well into my early 20s. Whilst studying for my LPC at the age of 23/24 I had a Cyst burst and went to the hospital. They told me I had chocolate Cysts which are indicative of endometriosis and determine how bad the endo was they would do a laparoscopy but I wasn’t keen on any treatment or surgery for personal reasons.
How did you realise that you suffered from this illness?
I knew at around 16 I was the odd one of out the girls. I wasn’t having a cycle and sometimes pretended I was because they did. But I brushed it aside and blamed external factors like stress and a poor diet.
I have seen recently on Social Media that you put a video where you were clearly suffering in regards to your symptoms, what was the public’s feedback in regards to your video? Also what made you put it up?
It was a spur of the moment decision like everything I do in life. I was very aware that a lot of people must think she is putting it on. It can’t be that bad. It was emotionally and mentally draining trying to explain it. I felt so isolated and I wanted people to understand. This was before the cysters chat began. I wanted people to see it for what it is. I know that not many women will make themselves vulnerable. I thought you got to see it for what it is. The first call I got was from my mum who was so worried and upset. They have had to live through it with me. My best friend has seen my mood change as she can see it coming with the pain. It gave awareness to other people.
I don’t have funding and it’s only now I have received some money from the lottery funding to do some projects and that doesn’t come through till October. At that point, I financially did Cysters by myself. I wanted to reach to people and this was the only way I could do it.
One video below is showing Neelam talking about her issues
Have more people spoken up about it?
There were a lot of women that came forward in regards to the video I did put up so that was really good. They now also support other women in the group. I also received negative comments as well. People thinking I was putting it on! They thought it was just for the camera. My mum was worried that people will prey on my vulnerable side. I can understand what she means. The risk to me outweighed the negative if I could help one woman. It takes one person to come forward and that’s the important thing. I believe that people come forward now because there is a reason to do it now. There are only a few charities that deal with Gynaecological cancers but with every issue supported. Not many charities deal with the social aspect of it so it was important for me that these issues were all supported. They are corporate charities and I’m a local person who has set this up and trying to help and support people even a 1-2-1 issue. Such as taking them to their hospital appointment. It’s been an eye-opener. There is at the moment 103 women in Cysters. That’s me finding them. But if others push it we will have more women supported. If we think there are 1 in 2 women who suffer from gynaecological issues how many women would join Cysters on this journey that would be fascinating to see.
(I watched the video and there was no way Neelam was putting that on I remember calling her and messaging her and the amount of pain she was in, it was hard to hear and she is a good friend of mine and I’ve seen her when she is in pain. I can say she could never put this on)
In terms of medical help, as in doctors have they supported these issues you have and understood more clearly that it wasn’t just a period pain? As I have read and heard such horror stories of women who just didn’t get diagnosed properly.
I was very lucky in terms of myself and my symptoms. Like most women in my group as you heard, suffer from these symptoms a lot worse off than I am. They have had horrific experiences. As I moved around a lot I had a different doctor every year. So I was lucky. So I had a different community gynaecological every year including a hospital. So you tell your story over and over again. There has been only been a few doctors who were dismissive of me this was recent. I explained I was in agony but I wasn’t in my cycle and I was going through all the motions. I thought it was pre-menopause as I was going hot and cold. I was given a printed leaflet of Endometriosis and PCOS and for a coil. I am very savvy as I have Cysters I do my own research and knew this wouldn’t be beneficial for me. Not everyone is lucky as me. When I was diagnosed I was given the same leaflet that was 10 years ago! I mean how bad is that! Same leaflet! It is so impersonal! I felt that they didn’t care and it wasn’t an issue. It really hurt me. I neglected my health as I didn’t know the severity of it. A lot of the women in my group got womb cancer and it may not have been linked but it if there was more awareness then it would be more different. As women, we tend to go to the doctors and they don’t bother. Or we just brush things under the carpet and I was one of them and the reason is no one told me or taught me this was important. No one at school spoke about it. If you can manage your health it will help.
Doctors are being told that they need to listen to women who complain about serious pelvic/pain according to the Guardian newspaper as it takes years to diagnose this. Do you agree?
So recently the National Institute for Clinical Excellence otherwise known as NICE. Have issued guidelines on endometriosis.
On average it takes 7 years for a diagnosis. Most women are turned away and told that they are neurotic women or to grin and bare it. For some of these women, it becomes too much as there have been reports of these women committing suicide due to the constant pain. Gynaecological and reproductive health problem are hidden.. women still look ‘fine’ (so I am told) and this mindset causes such long delays in diagnosis.
It is bizarre that the NICE guidelines have had to tell doctors to listen to their patients rather than simply dismiss them. Clearly.. it is too radical to think of women knowing their own bodies.!
I sat today in your first ever Cyster chat and it really opened my eyes to the pain and trauma the women in the group go through. Wrong medication. Wrong diagnosis. Miscarriages. No support. I was horrified. Why did you decide to form a Cysters chat? How did that happen?
We do an online chat we do 2. One is on a Tuesday which is a public one via Twitter. It can be ranting or raving about a gynaecological problem. Then we have a private chat for females to be supported about these issues. It’s been an eye-opener. These women are struggling due to the lack of support. They are an inspiration to each other. I want to put them together and they can form a Cysterhood. It has slowly started to happen now I’m happy to see it. They have all gone through the same issues but in a different way. They have each other now. They are inspirational women! I’m not the inspiration.
You say you are not inspirational or a role model, which to me I don’t believe as I know you are also going through these issues. You never put yourself first and you have set this up by yourself without any financial backing all to support these women and so they have someone to confide in don’t you agree?
I know what you mean. But to me, it’s these women who make me wake up every day. The Cysters chat was the first time we had all met each other. There are a lot of us in the group. We have known each other a while now. I am happy I have these women in my life as we all support each other.
Having your Illness has that affected you in your personal life such as having a partner or wanting to have children?
Yes of course it is. My partner I had in the past didn’t want to get married to me as it turned out it was because of my gynaecological issues. He wasn’t sure if I could have kids and that it would bring shame to his family. So that ended. I have been on dates but nothing. I remember one occasion I was asked straight out when we met can you have kids? I was very shocked as he had googled me (laughing) I replied how does anyone know that? It was a tough question as I don’t know until it happens if I can or can’t. It does really affect your relationships I’m in pain and you do take it out on your partner as it affects your mood swings. It is physically draining. It’s not a joke! It’s hard when you explain why you have a 7 week period this is an issue and it isn’t something you can put on.
You were once told that you were the promiscuous girl in Birmingham due to the fact that you were openly talking about serious gynaecological issues. It really pissed me off. Did that upset you hearing that?
It was because I used the word vagina. They automatically assume it is about sex. That’s where the problem lies as it is cultural as well. That’s because sex isn’t what you are supposed to talk about. Asian women are meant to be quiet and sit in the corner. But I am a fierce advocate especially coming to women’s health. These gynaecological issues can affect your sex life. Marriages or even having a partner. These topics do need to be talked about. I have had a lot of backlash about talking about sex. People thought I was a hooker as I was talking about this openly and this was online via the social trolls. But never face to face. But only once I remember years and years ago I was at a diversity networking event, I was told that I was doing to my dad’s besti (shame) by talking about these issues. I was so upset and it does make you question yourself and wonder whether I should carry on. But it’s their opinions
My answer to that is if you were a male then it would be a very different story as you are a female you will get the backlash. Especially an Asian female. This infuriates me as you are talking about real problems. A man can talk about whatever he wants even about gynaecological issues and they will take him seriously. But a woman can’t?
Yes, I agree! I’m glad you picked up on that point. For example, Balls To Cancer for prostate cancer they don’t have the taboo around it. But the only thing is that men don’t really want to openly talk about it. There is no backlash with them when talking about that kind of issue. But I do. I get inbox messages of all sorts of crap what people say about me. Or they make fun out of the work I do. But sadly I have had to get used to it. But you grow a thick skin. I am a very soft person and it does get it to me sometimes and it is natural.
There isn’t much awareness in regards to this do you agree?
No there is not much awareness. But what I have said is I don’t want money off people. I need awareness. I need the support and support for the women who are going through this. I need peoples network and join in. I want to do more workshops and work within the community. I want to share it with everyone.
You are not alone! There are so many people in the group that help. It doesn’t have to be public it can be private so please get in touch! Especially when they know how you feel.
What’s next for Cysters?
We are supported by Lottery funding working on a project with women in the workplace and we will be doing a white paper around that. Also, the School of Social Enterprise so that is also exciting. I want it to have a real solid foundation not just in Birmingham. I want a holistic side also and have proper treatment for the women. Gynae issues affect all your body and people don’t see that. So I want to bring things like that in motion also.
I am so proud of Neelam to be standing up for these issues. She is not promiscuous just because she talks the truth about women’s health. Neelam is helping so many people and I’m proud of her and proud to call her my friend. Please show support and if you have any issues please contact Neelam. Or go to http://www.cysters.co.uk