I’m so happy to kick off season 12 of the Period Story podcast! My conversation with Neelam Heera-Shergill, the CEO of Cysters, an award winning charity working at the intersection of reproductive justice, racial justice and health equity.
In this episode, Neelam shares:
- The three biggest signs that her mum spotted that told her that Neelam might have PCOS
- The flippant comment her university GP made that left her feeling uncomfortable and upset
- Why she wishes she was told much earlier on about the connection between increased risk of fatty liver disease and heart disease, PCOS and being of South Asian heritage
- How she navigated dating, PCOS, PMDD, endometriosis and conversations about potential fertility issues
- Why it was important for Cysters and Endometriosis UK to report on the longer endometriosis diagnosis times for people of colour
- The racist messages she received because of this report
- Her thoughts on white privilege in the women’s health space
- Why food sits at the heart of the work Cysters does
- And of course, the story of her first period
Neelam says not all work needs to be done in silos and we are much more powerful when we come together.
Thank you, Neelam!
Get in touch with Neelam:
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SHOW TRANSCRIPT
Le’Nise Brothers: Thank you so much for coming onto the show. Let’s kick off by me asking you the question that I start each episode off with, which is tell us the story of your very first period.
Neelam Heera-Shergill: I remember, I don’t remember how old I was at the time, but I think the one thing that probably sticks in my mind the most and probably my families, was I knew it was going to start, I know we’d had the period care and mental health is branded under sex education. So we’d had all those conversations in school and I remember going to the toilet and I remember it wasn’t like bright red or anything like that. It was like a darker brown. And I just knew instinctively, I knew this is what it was. And I went to the top of the stairs.
I called down the stairs, I’ve started, and um, my mum came up and she was like. I didn’t, she was, I remember I said to you, I didn’t need to announce it like that in the whole house. Obviously being in a South Asian household, um, it may have been uncomfortable, but also I’ve been quite lucky. I’ve come from quite really like a liberal household.
My mum taught things like sex education, so stuff like this was quite easy going in our house. So my dad didn’t say anything either. Um, but that’s the one specific thing I remember the most is just standing at the top of the stairs and being like, I started!
Le’Nise Brothers: So it was quite, quite open. And did you feel like you could ask any questions about what you were experiencing?
Neelam Heera-Shergill: Yeah, so this is where I think my experience has been South Asian are really different to the majority because of my mum and her background as being a nurse, a school nurse, um, and educating in this area. I was able to ask those questions early on, and that’s where we sort of know, um, about my own journey with having mental health issues and getting my first diagnosis with PCOS.
That’s kind of how we knew because my mum kind of spotted the abnormalities and little things like that first. But yeah, we never had a, a household where it was massively shameful to talk about that came outside of our immediate household, and that came more societally than it did come from my parents.
I, I still remember like times where I would be like on my period on feeling unwell and dad buying me like KFC and bringing me that home and chocolate and things, and then just little things that they’d put, um, a hot water bottle in the bed for me, it’s just so many little things that they used to do that I know a lot of people my age, south Asian households never had that experience because it was just summat they didn’t talk about.
And it wasn’t something that I felt like I need to have a sit down conversation with everyone in the household because it wasn’t something that was a taboo and it wasn’t something that I was embarrassed of. And I never had any problems at the start, uh, with my periods. And yeah, it was just, it was just my next phase of life.
Le’Nise Brothers: Yeah. And you mentioned that the PCOS diagnosis came because your mum was able to spot the signs due to the work that, that she did. Yeah. Can you just say more about the signs that your mum was able to spot?
Neelam Heera-Shergill: So the, the three biggest signs that she spotted was facial hair growth. Again, that could have been attributed to being South Asian ’cause naturally we do have a little bit more hair. So she was bit conscious of that. And then obviously. The fact that because I didn’t hide when I was on a period she noticed that they weren’t as frequent, they weren’t as monthly. And if they were, if I had a long gap in between, when it did come, it was super painful.
Um, and just not very nice. And then I had started, I’d gone from being quite, I don’t even know if athletic is the right word, but being quite slim. You know, fine for my age, um, in terms of like, let’s look at the word BMI, even though BMI doesn’t really exist, but that’s a different story. I started putting weight on quite rapidly, and particularly around my stomach.
So these were the telltale signs for mum that this is indicative of PCOS and they’re the three things that the doctors would ask you anyway.
Le’Nise Brothers: Hmm. And your mum spotted these signs. And what was it like then going to the doctor to then pursue this this diagnosis?
Neelam Heera-Shergill: So I didn’t pursue anything until I got to university, till I felt it was becoming an issue.
And I think that was quite a good thing because it taught me to take ownership of my health. Um, so I moved away to university. Um, I was living away from home, so it took it sort of grounded me in this experience of this isn’t right. This is what a period is supposed to look like. This is how it’s supposed to be.
I’m not supposed to be in this much pain. I’m not supposed to be this many months absent, et cetera. I know I’m putting on weight. I know that I’m getting much hairier. I know that I was losing hair as well. And um, so I engaged our GP like through, through the university and I think it was the first time that I actually went to the GP for myself rather than going with my mum for something.
So it was that transition for me as well to being more of an adult about my own health.
Le’Nise Brothers: When you went to the university GP, were they quite accepting of what you shared about what was going on with your health? Because I know sometimes we can, as women and people with periods, we can experience a lot of pushback.
Neelam Heera-Shergill: Yeah.
Le’Nise Brothers: When we try to get medical help. What was that experience like for you?
Neelam Heera-Shergill: So I would love to tell you just because I already had the answers that I was told. Perfect. We’ll sort it out straight away. But what I was told is you’ve just come to university, there’s a massive lifestyle change. You know, I’m not eating as healthy.
I’m going out. I’m, I’m sleeping late, like it’s lifestyle changes. That’s probably what it’s come back in, I think three months and keep a log of like the food that I’m eating and all of these things. Those three months turned into another three months later because I, I was told to like lose weight.
During that time I hadn’t really lost anything and it was my first year of university. I wasn’t going to just subtly start losing weight. It was a whole different lifestyle for me. If anything, I went the other way and put on a lot. My first year of uni, I put on a lot of weight. So I was really struggling and meeting these thresholds.
It’s then six months later and I’m not, I’m not getting anywhere, and I don’t think I’d even had a period, and I knew this wasn’t right. And I felt uncomfortable. Like you know your bodies. Mm-hmm. Right? We all our bodies as women, we know that if there’s something wrong, there’s something wrong. And so I was very conscious I just needed to get someone to listen to me, so they agreed, because I hadn’t been on a period for six months at that point. It might even been longer than six months by the time I went back to put me on the pill at this point, I think it’s called Dianette to cause I think it’s called um, like the withdrawal bleed. I didn’t actually know it was called a withdrawal bleed at that point. I thought it was an actual, I thought it just made your period come back. And this is I guess my naivety, but also I think the lack of education around this subject or the fact that the doctor just never told me this is what actually it is.
So I was really under the impression that I was actually having my proper periods back because of the pill. Unfortunately the pill wasn’t great for me. I hated being on it. I mean, I can, I can’t explain to you the amount of time I ended up missing from, um, uni in that first year. It wasn’t just physically being in pain because of period, lack of period ’cause it still felt like quite cyclical at times from what I remember. But the migraines and nausea, all of that that came with the pill was awful for me. And I just, I remember saying to some of the friends I’d made at uni. I just felt really silly about this because obvious it’s your first year of university.
These people are new. You’ve actually only known six months as well. So my health journey and making friends. And I felt so silly trying to say to people that I’m on the pill and I feel like this, and this is why I keep missing uni. And I remember, I remember a lot of my friends in that first year just thought I was a bit of, you know, you, you get, you go to uni and some people just don’t really come to the classes.
They’re not really that bothered. I was kind of labeled as that person, and it was actually just because I wasn’t well. And I couldn’t really, I didn’t have the language or the understanding to say it’s related to this because I didn’t really know. We didn’t really know, and I didn’t even have the confirmed diagnosis of PCOS till a little bit later either.
Le’Nise Brothers: So when you were experiencing these migraines, so because migraines on the pill are a red flag, did you go to your doctor and say, I’m experiencing nausea, I’m experiencing migraines. Yeah.
Neelam Heera-Shergill: I had all those conversations and they moved me to another pill. But I think at that point I was just so tired of being on tablets for anything that was like I don’t want to. I think I took the pill, I took the prescription. And interestingly, I remember this one thing of I wasn’t taking the pill for contraceptive purposes. I was taking it for PCOS. Now if you take the pill for contraceptive purposes, it’s free. You don’t have to pay for it. ’cause contraceptive is free in the UK.
I had to pay for it. And I was quite aggrieved by that ’cause I was like, why can’t we just say it’s for contraceptive? And he was like, but no, this is what we’re doing it for. So I remember you’re a university student, you don’t have a lot of money. I was really pissed off. And so these were the little things that I was like, I just don’t, I don’t quite understand what I’m doing, but I have to trust the doctors.
Le’Nise Brothers: Yeah.
Neelam Heera-Shergill: And I also remember one of the things I always say when I talk about this. One of the, I think a third or the fourth time when I was getting the Dianette pill, the doctor actually said to me and he said it really flippantly. He wasn’t horrible about it. And I think this is why I’ve never really thought of it as a bad thing until I’ve got older.
But I remember him saying to me, it doesn’t mean that I can go around having sex with everybody.
Le’Nise Brothers: Oh my gosh.
Neelam Heera-Shergill: And it was a really throwaway comment.
And like I said, there was no violence or anger in the, the conversation. And I remember laughing it off because it’s, you know, first year of uni, it’s kind of this thing that’s like around that you’re going to be promiscuous or whatever people think. And I just, I really didn’t think anything of it. And it’s not until I’ve got older, particularly with the work I do now around with Cysters and really challenging some of the, that the ideology that I’m like, oh, that was not okay.
Le’Nise Brothers: Mm.
Neelam Heera-Shergill: Um, and that, and I’ve always, but I’ve never forgotten it. I’ve, because it was such a flippant comment that it, and it did make me feel a bit uncomfortable at the time, but not so much that I was like, I’m not coming back in. I don’t want to engage with you again.
I just know I felt a bit like, oh and then sort of scurried away, and then obviously went on my journey with sort of the PCOS diagnosis.
Le’Nise Brothers: Did anything change for you once you got that diagnosis?
Neelam Heera-Shergill: I think I was able to finally say, particularly for uni and taking the time off that I finally got this diagnosis and that didn’t happen until like I I think, I feel like it was after Easter. I really feel like it was after Easter. So we’re, it’s a good nine months into uni at this point. And that was helpful because I failed some of my exams. I had, like I said, I’d kept taking time off. And it was helpful for me to be able to resit those exams in summer and have the case to resit the exams.
And I was really upset about it because I’ve always been quite studious and I’ve never had a problem with university and things like that. So this is the first experience for me and me not doing well, um, academically, which was a real shocker for me. So yeah, having the diagnosis, I was more concerned about the validating my experience, not for me, but for my university experience and for me to just go on and progress to the second year ’cause I was terrified that after retake the first year.
Le’Nise Brothers: Mm.
Neelam Heera-Shergill: So it was more for the fact that it, it, it caused such a blip in my academia that I want, I needed it to just get through the next hurdle.
Le’Nise Brothers: Yeah. Did that change anything about your relationship with your period as you moved through your twenties and then into your thirties?
Neelam Heera-Shergill: Well, I didn’t take the pill. Um, I, I decided not to. So I had throughout university really absent and then really like horrific periods when they did come.
So I, if I’m, if I’m completely honest, I think when I got the actual diagnosis, I remember he printed off like a sheet of paper and it had like the outline of what was meant to be like a woman’s body and the uterus and the pelvic area. And it was a go, I remember it specifically because it was a printout from like Google, because at the bottom of the printout page, it has like HTTP and then like the internet address.
So it wasn’t like a proper leaflet. Mm. So I thought it can’t be that deep because if it was that important, it would’ve a proper leaflet. Right. It would like if it, if it was cancer, you would have like a McMillan leaflet. So I didn’t really pay it no mind. I remember taking it back and just being like it is what it is. I wasn’t really upset. I wasn’t really bothered because I didn’t think it was a big deal. And because it put so much on lifestyle, I thought it just, it’ll just come back. When it comes back. Obviously the rest of my uni life academically went fine after that. I was able to manage myself a bit better.
I wasn’t on the pill and, um. But I was putting on a lot of, lot of weight. I wasn’t looking after myself or because I didn’t understand what PCOS really was, I didn’t understand. I, to this day, like one of the things that shocks me the most is like PCOS, we always talk about it from a, um, a fertility angle, period angle, but actually, with it being an endocrine disorder, your risk of heart disease goes up massively and fatty liver disease. I’d never even heard of those terms relating to PCOS until many, many years later when I was probably in my late twenties. So then what 10 years has gone by then before I’ve even learned that that was a big thing.
And in the South Asian community, those two things are really prevalent in our communities. So it always, I think discourages me that I was never really told what this condition was and I was only given this sort of sheet of paper printout that really didn’t mean anything, but actually the depth and what the severity of PCOS can do if not managed well is quite severe.
And I think those three years at uni had I looked after myself better and understood the condition, I would’ve been in a better position with my health possibly today. And it took me a long time to start figuring out what worked for me, and I think it got to it got to a point where I was very visibly uncomfortable.
I was very visibly overweight. I remember actually getting my graduation pictures and being like, I did, I, I, did I read, do I really look like this? And I got a job after university in a law firm because I used to work in law. So I was quite fortunate straight away. And, um, I just remember thinking I need to figure out what’s going on with me now.
And I went to, you know, I moved to a new town. I got a new GP and I ended up being put on Metformin to manage my PCOS. That, again, was an awful, awful drug. It made me constantly go back and forth to the bathroom. I probably lost so much weight because I was too scared to eat at one point. It did have its plus points in that it did help me regulate weight.
My period suddenly started coming back. It was probably ’cause I started losing weight again. But I still don’t quite understand what that drug was doing to and for me. And I know there’s a lot of people with PCOS that don’t actually get prescribed it now, so I still don’t quite understand. What the benefits it, was it what it was actually doing for my PCOS, I just, I just needed something.
So like I said, I did manage to start losing weight again and then my periods started coming back. And I think, ’cause I was feeling better, I was able to start looking after myself more, which obviously did have a knock on impact, but I don’t ever, want to put anyone in a position where they feel like they have to lose weight to, to manage their PCOS because that’s not the same thing at all. Yeah. I think my issue with my PCOS journey is that I was never really told about what it’s, how to manage it and actually really the severity of the condition.
Le’Nise Brothers: And what is your relationship like with the PCOS now?
Neelam Heera-Shergill: I think, look, I think it’s still going to always be up and down. I think now I get more, if I’m stressed, it triggers a lot more and I, I have these visible telltale signs when my PCOS is not in a great place or it, my body is not in a great place, like my hair will start falling out immediately. If you look at the photos of me for the last few years of university, I’ve got very, very short hair and that was partly because it was falling out so much.
It sounds really silly, but that was a big part of me. Um, and losing my hair is always like my telltale sign that things aren’t okay. And also the severity of hair growth is another one for me. So if I start getting loads and loads of hair on my chin, like just popping up really quickly, I need to have a bit, I guess almost a detox slash clear out, and also when I say that, I mean a bit of time for myself, not just food or lifestyle related. I mean actually stepping away from the screens and stuff and actually getting out a bit more. Mm-hmm. I tend to find in the colder months, it’s worse because I’m not really leaving the house.
Le’Nise Brothers: Mm-hmm.
Neelam Heera-Shergill: In the summer months it’s better because I’m physically out a little bit more in the sun and things. But my relationship with PCOS I think is different because I understand the condition a lot better now. Yeah. I understand severity of it. I understand that. Some of my risk factors for heart disease are much higher because I’m South Asian with PCOS.
And I think all those things have made it really easier for me to understand the condition from a personal perspective.
Le’Nise Brothers: And you mentioned fertility earlier.
Neelam Heera-Shergill: Mm-hmm.
Le’Nise Brothers: And when I work with people with PCOS often that is a big question. They’ve been told that they’re infertile or they have some sort of secondary infertility.
And that is a big journey that I explore with these women. Can you talk a little bit about your journey? Because now you have a 20 month old and you know, I know that you have been through a lot on that side. Is there anything that you feel comfortable sharing on that topic?
Neelam Heera-Shergill: So I think because I have PCOS and then I’ve got other health conditions as well, like endometriosis, I’ve got PMDD.
I always knew that um having a child was going to be difficult. So I even actually, when I was dating, I was quite upfront about that. Having a child, and fertility is placed on a really high pedestal in our community. It’s almost, it’s a cultural like mark of womanhood. It’s not a religious requirement.
It’s more of a cultural thing. So I was always very like, look, these are my cards on the table. I’ve got these conditions. This is what it means, this is what it might mean. I can’t guarantee anything. I don’t want to go down this road of, um, getting into a relationship and finding out later on, this is not what you want because I might not be able to have children.
I think it’s really, it was important for me to be able to take ownership of that. Obviously there had been relationships where that was a, an absolute no-no for them, so they didn’t want to pursue it, which was fine. Until I met my husband who was very much like okay then. Right. And I remember that evening something that I, this one thing that’s I really, really made me, not even just fall for him, actually just really made me respect him as an individual.
But he told me he researched it himself. He’d watched my TEDx talk. And he had a real good read of everything that he could find on me, um, and understand from my perspective what it was and look at, because I’d already been running Cysters at that point, and I thought that’s the first time that I’ve seen anyone actually actively engage with what this condition is rather than just hearing it from me.
And that’s it. And, um we spoke really at length about it. We even spoke like, if it doesn’t happen, if we want to stay together, would you be open to things like adoption and all of those things. And I had a, I have a really great husband who was happy to just go on that journey with me rather than discount it.
You know, we did unfortunately struggle with conceiving. Um, we did unfortunately have miscarriage, which was really hard for both of us. And so when I did become pregnant again, it was perhaps the most secret pregnancy I had ever had. Um, I went through the whole pregnancy with probably a handful of people that knew.
So my, my family, his immediate family, and, um my very, very close friends who were just keeping an eye on me every time we were somewhere. I’m a hoodie type of girl, any hoodie and trainers. So I concealed this pregnancy very, very well up until probably the last month where I suddenly just popped. We we even held a massive conference at Cysters, um, on menopause in Birmingham. And it was like around 80 people were there and I managed to pull that conference off and no one clocked I was pregnant apart from the people that knew. And I just remember when everybody had left the, and I was just lying on the floor like, guys, somebody needs to get me home.
I was like, I’m dying. And then after that, that’s when it became more apparent and obvious and I just couldn’t hide it after that. But it was even for friends that I’ve known for a long time, it was a real shock when I did have my daughter, they, they didn’t know I was pregnant, but that was because going through the loss was so horrible for me to even communicate that to people after saying that I’m pregnant.
It was really difficult. And I didn’t want to go through that again, so I’d rather get to the, the end of the, that term and everything be okay?
Le’Nise Brothers: Yeah.
Neelam Heera-Shergill: I think having the PCOS, the miscarriage has had such an impact on me. I was a really anxious pregnant person, but I’m a really anxious mum as well.
And it’s sort of transferred into that. And it’s something that I always say to my husband is like, I really don’t want her to have any of the conditions I’ve had. It’s something I’m terrified about. Obviously I have the tools and knowledge to help her if she does, but the things that I’m just actually terrified about and having PCOS, it means you are more likely to have gestational diabetes, being South Asian, you’re more likely to have gestational diabetes.
And that was an interesting one because I said very straight away, I’m probably going to have gestational diabetes. And I remember saying I think we should do this test earlier. I’m probably going to have gestational diabetes. They didn’t. I ended up having it a little bit later because of some of the, the waiting times.
And lo and behold I had gestational diabetes and I was like, I told, I told everybody, and I think this is really reflective sometimes of just not being listened to when you know your body. I mean, it took me so long to actually get the PCOS diagnosis bearing in mind my, my mum knew around 16-17, and I’d already engaged at seven 18.
It took me till at least 19 to get the diagnosis. And then I’m telling people, I know I’ve got gestational diabetes. And it was kind of like, don’t worry, you’ll be fine. We’ll, we’ll do the test when we do the test. And I, I did, I had gestational diabetes and it was such a shame because I really struggled with eating throughout the pregnancy anyway.
And then when I did finally get an appetite back, I couldn’t eat anything properly because it was ’cause of my gestational diabetes. But all those things, I think. For PCOS women, not everybody’s told that they’re more likely to get it. And I think it’s just things that we need to be aware of if we’re going down that fertility.
Le’Nise Brothers: Yeah. We talked a little bit about the endometriosis and PMDD. I want to just circle into some of the recent work that you’ve done through Cysters where
Neelam Heera-Shergill: mm-hmm.
Le’Nise Brothers: You talked a lot about delayed endometriosis diagnosis and we’ve just come out Endometriosis Awareness month and there’s this stat that we always talk about, which is it can take between seven to 10 years to receive a formal diagnosis. Yeah. And what we know through the report that, and the work that you’ve done through Cysters is that that diagnosis is longer for people of colour. Can you talk a little bit about that as, as well as your own story around endometriosis?
Neelam Heera-Shergill: So I think one of the reasons I wanted to look into that is ’cause when I was looking at the, um, stats around the, that figure, so when I first came into this space, it was a seven year diagnosis delay, and now it’s officially like a nine year diagnosis delay, and then it’s 11 years if you’re a person of colour.
I was looking at how many people have been interviewed and I realised that there’s not many people from the global majority background, and I always wondered why, when it comes to research, why are we not reflected in it and why is that nuance not there? We applied for funding from so many places to try and get this off the ground.
We didn’t get anywhere because no one wanted to fund it, and then we approached Endo UK to say, do you want to do this with us? Because it just makes sense to do it collaboratively. And they agreed. We had no funding or anything. We actually, I did it through my maternity leave, putting this together.
So it was a lot of labour, literally figuratively, putting this together, putting this report together. I do wonder if we have some pro, if we had proper resource behind us, whether we would’ve been able to interview, speak to more people, get more voices, and whether that figure of 11 years is actually accurate or whether it’s actually bigger.
Um, because if you think our sample size still probably isn’t reflective of the community, but this is a start for us to push for something. And so even speaking to people on their journeys, what we realised is what and what one of the things that the report shows is that people of colour are actually presenting themselves quicker to primary care services.
And that’s in my experience as well. We’re going to primary care. Uh, primary care. We’re going to the GPs faster, but we’re having to wait longer to get the referral to the next part. I think for me, a lot of mine was try and lose weight, lifestyle changes. My old, my mine may have been slightly different because I was in, um, I was university then living in like shared accommodation.
I was moving probably less than a year, every year to a different place. So my GP was physically changing all the time, so I had no continuity of care with the GP at all. So I think that may have played a part, particularly with my journey, but then I’m seeing that replicated in people that are international students, for example, who don’t have that continuity of care.
And I think that’s also important to recognise is that just because you might be South Asian or from a black community or the global majority, there’s so many other factors. It’s such a multifaceted conversation as to why diagnosis care is longer. And I think, um, some of the things that we were talking about is this general not believing when women are saying, I’m in pain and I need to be referred.
And a lot of GPs coming back with can you try this first or can you do this first before I refer you? Whereas my belief is genuinely that if there’s something that beyond a GPs specialty, it should be referred there and then
Le’Nise Brothers: yeah,
Neelam Heera-Shergill: That will, that will massively cut down the waiting time for the patient.
Obviously that’s not going to cut waiting times down for the NHS, but the waiting time is so long, you need the referrals straight away because after you’ve even been referred, you’re waiting a really long time to even get to a gynecologist. Yeah. Um, in relation to my journeys, but what’s been interesting most recently is, um, I was discharged out the waiting list I was on prior to having my daughter.
And so I went back to the GP because I, I mean, I’ve had my daughter now, but I’m still in pain. I’m obviously, I’m still, it’s not gone away. And when I asked, I where the referral where we’ve got to with my referral, back to my gynecologist so I can have a conversation. I was told that that’s, I’m no longer on that list.
And when we got down to the reason as to why, ’cause I had a baby and I was like, but regardless, I’m still in Pain. My, my referral to the gynae wasn’t because of fertility, it was because of this endo journey or this pain journey, et cetera. And so now I’ve had to start all over again. It was actually, I think last week I got the text message through sort of the NHS app saying that my referral’s been accepted.
I’m on the waiting list again, but my daughter’s turning two this year, so I’ve been waiting for a really, really long time at this point. And I think sometimes decisions are made about you without you and this assumption ’cause you’ve had a child that you’re just, okay now it’s absurd because that doesn’t work like that in real life.
Um, and you know, when speaking to other people, having a rant about it in the community gatherings that we do at Cysters, I’m not the only one that’s had that experience. There’s almost this, uh, misconception that you’ve had a baby. So you’re fine now.
Le’Nise Brothers: Yeah.
Neelam Heera-Shergill: And that’s not the case at all.
Le’Nise Brothers: And what’s really interesting about that is that even today women will come to me about endometriosis and they’ll say, oh, my doctor told me that it will all get better once I have a baby.
And we know that that’s not the case. When we look into what endometriosis actually does in the body, we know that’s not the case, but it’s still mind blowing that doctors still say things like this.
Neelam Heera-Shergill: Yeah.
Le’Nise Brothers: And I want to now talk a little bit about the racial side of it, because you wrote a really interesting LinkedIn post where you talked about white privilege when talking about justice and in health.
Can you just say a little bit more about that, because this came off of the back of the report that Cysters released.
Neelam Heera-Shergill: We, um, did this report jointly with Endo UK. As an organisation I think it’s really important that we work collaboratively with as many people as possible. That really comes from the fact that as an organisation, we’re decolonising and we’re all about collective liberation. And decolonising work means that the work is not ever going to be individual or siloed. It has to be with collective people around the table. So our door and our table is big enough for everybody.
So for me working together with people is really important. I just really think it’s the way we’re going to move forward. I mean, we can’t talk about collective liberation. If I’m leaving you behind it, that’s not going to work. Um, so we went with that approach and the press release that we had put out was a joint press release, but we had agreed that Cysters would be named first on everything. If you even open up the report, the forward is from me right at the beginning because I’m the one that had lived experience of the condition as well as writing the report as well, um, as well as one of our trustees, um, Sarah being the lead researcher.
So imagine then when it’s picked up by media and we’re cut of it, we’re completely cut out. So that’s, for me as a choice, that was a choice of journalists to cut us out. And so when challenging some of those narratives and when even when the report came out publicly on Instagram, some of the messages that we got were, um, I’m playing the race card.
And so, it’s been really interesting, some of the vitriol that I’ve received personally off the back of this. Because I’ve spoken a lot about white privilege in this space. I don’t have the privilege to be able to be like, I’m going to take my skin off now. Race isn’t a card that we were dealt, a card that we have. It’s who we are. We can’t be separated from that. And if we are talking about race to platform whiteness as the, the authority on that is really problematic for me. Um, regardless if, you know, the journalist has made that choice to do that. It really reframes the fact that our voices have to be carried by the white majority first before we’re listened to.
And it literally speaks to the whole reason this report was done in the first place. So if anything, as much as it’s hurtful, it’s proving my point about there is a racial disparity here, even to be able to say there’s a racial disparity I have to work and I have to white people to say it, to make it believable because you won’t hear it from me.
And this is where the discourse for me comes through. This is why the white privilege really comes through. And when I spoke about white privilege in this space, I had a lot, I mean, I’ve, I’ve been subject to a lot of really horrible racist messages in the last week because of this report. But it just shows how easily grassroots organisations, ones rooted in social and racial justice, can spend years building trust. But when it comes to actually platforming this work, we will be cut out of it without a, you know, without any worries. And I think that happens quite often to our communities. This is not new.
Le’Nise Brothers: Mm.
Neelam Heera-Shergill: And I am, I’m honestly tired of that. I’m tired of that narrative. I’m tired of having to be propped up by other organisations to be seen as the authority, even though we are the authority for the fact that we live as black and brown people.
The fact that we have lived and the, these conversations about Delayed diagnosis are our lived experiences, but we need someone else to validate that, to make it believable. And that’s the bit that I really sit with and I want, I invite everybody to ask themselves why that is the case. Because for me when we’ve called out levels of white privilege, a lot of the messages I get back is, I’m making it personal, but calling out privilege in this space because I have different types of privileges compared to people around me. But calling out privilege is never about people personally. It’s about the systems that we’ve just been put into and how we can make those systems better or worse for the people around us. It’s for me, the power dynamic.
So if we continue to ignore that this is actually happening, then we’re perpetuating the issue. And that’s the whole point of everything we’ve been talking about. And when we centre a white voice in that, we centre their journeys and then again, not ours, and we’re just the add-on, it’s almost been the robin to the Batman, we’re the sidekicks and that’s not it.
And, and essentially. What journalism has done is system systematically erase a whole community by doing that. And that for me should be problematic for everybody who sits in this space because it just shows that our voice is not as valued unless it’s propped up by another, another voice that holds the majority space.
Le’Nise Brothers: Were you able to challenge any of the journalists that cut out the work that Cysters had done in this report?
Neelam Heera-Shergill: I, one of them I had, and they made an amendment in their post saying that it’s with Cysters. That’s it. But you know, the damage is done, right? Changing a caption in a post doesn’t change what’s really happened, um, Endo UK are uh, speaking to the Guardian at the moment to get things changed.
But like I said the damage is done. Yeah. If you look at some of the posts and the community, I don’t think I’ve really had to say very much, uh, partly because I’ve just been really busy with wedding season, but the community have been angry and it’s all people of colour. It’s all the global majority that have been the ones to stand up first and be like, actually, this, you’ve completely cut Cysters out here. So our voice in numbers does matter and it can make change. I think we need to sometimes remember that, that just because we get erased from the main space doesn’t mean that we don’t have a voice at all. And for me, I want to, I want to redirect the focus of the shoddy journalism to the work that we’re doing, the community that we’re supporting, and the actual findings in these reports, but more so is the recommendations because I want people to do something with this now. I’m not going to sit there and just be getting racist messages telling me to go back to Palestine and Afghanistan and all the horrible things that I’ve had this week for nothing, and I want to make something happen off the back of this.
Le’Nise Brothers: What can happen off the back of the report? What recommendations do you want to see going forward?
Neelam Heera-Shergill: Well, because this report was completely unresourced, I would like to the government to commit to looking at data intersectionally because actually this is beyond race as well.
If we look at disability, if we look at class and things like that, I think it’s important to recognise those nuances, um, as well. So that’s something around how we capture the data. I would like primary care to be trained up to be able to make these referrals much quicker because that is where we have seen the bulk of the problem, because we’re presenting quicker.
So a lot of people say we need more awareness campaigns. I mean, awareness is always great, but clearly awareness is working ’cause we’re going to the doctors sooner. So it’s not an awareness campaign. We don’t need another Instagram campaign. We actually need someone to go and do something about it now, um, because clearly it’s working because we are presenting quicker and then.
Some of the other things I, I would like some much wider research done into this space with this nuance that is actually done by people in this space. So it’s not left on black and brown people to do said research. And I want that to be supported by those people that are the stakeholders in that space.
Le’Nise Brothers: Yeah. The work that you’re doing is amazing and it’s not just campaigning work that you’re doing, but you’re also doing a lot of work within communities. And I think the mission of Cysters is so interesting because what you’re doing is highlighting not only menstrual issues, it’s menopause, it’s maternal, it’s also mental health issues.
Neelam Heera-Shergill: Yeah.
Le’Nise Brothers: And something that I find fascinating is the fact that you food sits at the heart of the work you do.
Neelam Heera-Shergill: Yeah.
Le’Nise Brothers: Can you talk a little bit about why that is?
Neelam Heera-Shergill: Yeah, so we had, um, our rebrand last year and part of that if you come to anything that’s a Cysters event, you’ll be fed and you’ll have some music.
There’ll be some joy, there’ll be a little, maybe a little dance. I’ll, I’ll, I’ll always dance because these conditions, these journeys are hard enough to go through. And culturally, ancestrally, food is something that brings us around a table. And I like to think of Cysters as a big table and everyone brings a dish and we sit and eat together.
We, we did a iftar this year, uh, what we do one every year. And whilst we hosted it and we did all the food. We never asked any of the community to bring their own food, but people did because they wanted to. That is the beauty of holding community spaces at its core, because people do the most without being asked.
Fruit had symbolic meaning. So things like mangoes are always linked to friendship and love. The chili we’ve used as part of our imagery because chili’s a little bit spicy. We think we’re spicy organisation pushing the boundaries a bit. I’m South Asian. I love a bit of spice. Um, we’ve used peanuts because ancestrally, a lot of people say eat peanuts when you are going through menopause because it’s going to help that brain fog.
We’ve used things like corn, watermelons, things like that because of the political aspect of it. So we’ve been really intentional with the way that we’ve done stuff. We’ve got like cherries in our work ’cause obviously links to that virginity popping the cherry. Everything we’ve done and how we brand ourselves, how we hold ourselves is really with an intent of community.
And those links back ancestrally because for me. Those are the things that keep us holding together.
Le’Nise Brothers: And even in the strap line, so taking up space together.
Neelam Heera-Shergill: Yeah.
Le’Nise Brothers: That’s really powerful because these journeys, they can be isolating. Yes. Thinking about, you know, the pain that can be quite isolating in endometriosis.
The mental health aspects of PMDD and how that can be very isolating. So knowing that you’re not alone and these community events that bring people together, that’s really empowering. Can you share some of the perhaps not necessarily success stories, but maybe some of the positive stories that kind of have come out of the work that you’ve done within the community?
Neelam Heera-Shergill: I think, I think the space that we create is, is quite positive physically in these community gatherings. I know a lot of people leave with friendships and for me that’s a huge thing. If it was a more practical level, we do baby milk drives, so whenever we get free baby milk, we’ve done two big drives now where we were given loads of baby milk, I think six 5,500 tubs of it, which we donated out to people that needed it. We’ve done that twice now because obviously we don’t get that donated very often, but when we do, it goes to the people that are most in need of it. And a story from the beginning of this year, which really still sits with me, um, when we were doing our donation drive and mothers were coming, there was one little boy and he couldn’t have, he couldn’t have been like older than a year. He must have been about 10 months. And he had loads and loads of, um, like blankets put on top of him on his pram. And um, and I was asking what, you know, why so many blankets? It was cold, it was January and she was saying she doesn’t have a proper coat for him.
This is the beauty of working collaboratively and this is why we should be working collaboratively. Because in that room I also had other organisations that we could work with who was at a baby bank in Handsworth, who we work with quite closely. And I was like the girls called, um, uh, Kavita, and I was like, can you help this woman get her a coat for her son?
And you know, it’s really stuck with me because she was so grateful for it and it turned out she needed some other things as well, which they were able to help with. Now, for me, they’re the grassroots level success stories, and they’re the things that you don’t see, and they’re the things that I’m never going to be able I’ll, I will never, you’ll never see that trauma porn on our social media. That’s not something that we are interested in. That would get all the clout and all the likes and people following us all the way. But I’m not going to put somebody through that trauma porn just to for that. But it’s really stuck with me. I always think I, I do always think back, I wonder if she’s doing okay. I wonder how her son is. And, you know, maybe our paths will cross again. Who knows? But to know that we were able to give her something. We also work with, um, the Birmingham like it’s like a food waste project. They’ve got loads, they have loads of food that they give out.
And when we did the donation drive, they brought us loads of like Gregg’s donuts and bananas and fruit. And I remember just sending her home and loads of bananas and loads of fruit and, and some donuts and things. Those are the things that I can do. I can’t change policy tomorrow, right? I can do research reports all day, but I’m not going to change policy.
But what I can change is how we show up and hold community and how we work collaboratively with people to make their lives a little bit better. And they’re the things that matter to me. They’re the things that you will never be able to capture in a picture or a post, but they’re the things for me that matter the most.
Le’Nise Brothers: Yeah. What’s coming up? I know you’re coming off the back of, and you’re still in the publishing of the report, the endometriosis report. Is there anything that you’re working on for the future that you can share now?
Neelam Heera-Shergill: So we have, um, sort of our monthly community gatherings. We’re trying to work with more researchers to ensure their research is reflected that the communities they’re talking about.
Quite a lot of the time, a lot of researchers contact us saying they want to work with, for example, a South Asian community, but their whole research team is white. So we, we really do question why do you think that’s the appropriate way to work with these communities. So we’re working to make sure research is actually done in a way that’s equitable and just for the communities that they’re serving.
And they’re the things that we’ve been working on at the moment and that some of the successful projects we worked on with, um, Warwick University. And we’ve actually got a six month long exhibition hosting another report that we’ve done, but holding the community at the heart of it. And that’s in Birmingham, the Brick Cafe where we have our, most of our events in our registered office. But it’s just a really lovely space to actually go and see not the influencers around women’s health, but actually the people on the ground. Yeah. Um, people at the end of life, people who have just died their journey. These people, women had never met each other before this project, and now most of them are really good friends.
And that’s the beauty of doing this work because those are the things that we can really hold onto in those times where we’re really struggling.
Le’Nise Brothers: Yeah. Well, I mean, I think the work that you do is amazing. As I mentioned before we started recording, we’ve been circling each other for quite a few years now.
There are some panels that, you know, we were meant to be on that didn’t work out, but I’m so glad To finally speak to you and like really dive into the work that you are doing where can people find out more about Cysters and find out more about the work that you do?
Neelam Heera-Shergill: So you can go onto our website. So it’s www.cysters.org.
Cysters is spelled after an ovarian cyst, so it’s C-Y-S-T-E-R-S. So it’s, that’s the spelling of it. And, um, on socials is Cysters group. And, you know, I’d, I’d like to think we’re quite accessible, so feel free to just get in touch if you ever need to.
Le’Nise Brothers: What’s the one thought that you’d like to leave listeners with today?
Neelam Heera-Shergill: That we are much more powerful when we come together. Not all the work needs to be done in silos. We definitely will move forward quicker if we look at collective liberation rather than the liberation of the self.
Le’Nise Brothers: Fantastic. Thank you so much for your time today. It’s been a real pleasure speaking with you.
Neelam Heera-Shergill: Thank you. Thanks so much for having me.