Brain fog and perimenopause

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1:10Hello, I'm James Reynolds. Welcome to the documentary from the BBC World Service. In BBC OS Conversations, we bring people together to share their experiences. This time, women discuss perimenopause and brain fog. Earlier this month, my colleague tech editor Zoe Kleinman was about to go live on TV to explain a global outage affecting dozens of websites and apps. Millions would be watching. But Zoe kept forgetting a key technical phrase. I'm standing there on my own. There's a camera on me. There's big lights on me. Everything is completely silent. And I just kept thinking, I don't think I'm going to remember this phrase.

1:50And if I don't remember it, then I'm not going to be able to say anything else. and at the last minute I just thought do you know what I have spent 20 years broadcasting without notes I was trained to broadcast without notes you know there's a real thing about public speaking with not having notes but I thought I'm just going to have to hold a piece of paper with this frozen because I'm worried that I'm not going to manage it so I did that and afterwards I came at it feeling like I'd failed actually I felt you know my professional pride I guess had been dented by this because it's something I've never really had to do before and I decided to write about it and I was very unsure about posting it but the response was absolutely astonishing it's had hundreds of thousands of views that post I've had literally hundreds of messages mainly from women although you know obviously there are other causes for brain fog as well expressing solidarity and women in all walks of life you know I have an unusual job I I get that Luke but teachers people hosting workshops people doing job interviews people just trying to have conversations with the families at home and suddenly struggling for words or, you know, being halfway through a sentence and can't remember it.

2:54It really struck a chord with so many people. I had women stopping me in the street to talk about it. You know, they never do that to talk to me about quantum computing, but they did want to talk to me about brain fog. One person said, let's start a movement called Hold the Notes, which I really like. So, you know, you may well see me holding notes a bit more often from now on. I feel empowered. Zoe Kleinman speaking to my colleague Luke Jones during our daily live OS show. Now, brain fog isn't a medical term, but it's that feeling of not being able to concentrate or remember something. For Zoe, it coincided with perimenopause, the start of the menopause and the time in life for women where hormone levels are changing.

3:31Other symptoms can include hot flushes, low moods and problems sleeping. Later on, we'll hear from women who had to give up their jobs because the condition became so debilitating. Firstly, though, we'll hear more from Zoe, together with Chantaquillette Carter, a comedian and entrepreneur from Texas, and Carol King, a perimenopause and menopause awareness advocate in Barbados. She's known as the menopause auntie. I have a story similar to many women. I actually started experiencing symptoms of perimenopause when I was 37. I am 56 now. But I did not know I was experiencing symptoms of perimenopause until I was 48.

4:13So I spent 11 years in complete turmoil going from specialist to specialist and nobody knew what was wrong with me. I was diagnosed after a stroke when I was 40, which is a whole different type of introduction to perimenopause. While some women, you know, slide into perimenopause like a slow burn transition, mine showed up while I was recovering from a whole medical crisis. So chronic illness has a way of amplifying symptoms that other people might brush off. So when I was healing from a stroke, everything was louder. The night sweats were louder. The fatigue was heavier. And the brain fog, I tell you, oh, my God, I thought I was truly coming down with early dementia.

4:50I was getting conversations and losing my train of thought in mid-sentence, thinking that it was all a part of my brain injury. But it was actually perimenopause as well. Walking into rooms like a Sims character waiting for instructions. It scared me enough to start Googling things. I had no business Googling. But I, you know, was able to talk to my doctor. he was able to talk to me about my post-stroke brain changes the perimenopause symptoms which is basically a cognitive double whammy together so doctors don't always tell women that especially black women and so as an advocate i wanted women to understand that hormonal shifts neurological trauma and chronic illness all live in the same house so your symptoms don't show up politely they show up loud messy and uninvited and they won't leave that sounds so tough carol what were the what were the symptoms that you struggled with well initially for me it started with fainting what was happening is that i was having drops in my blood pressure i was just having these sudden dips and i would just clock out wherever i was and i didn't work for about six months due to that i went through a lot of tests and nobody could really tell me what was wrong and then from then on it went on to other things like the same brain fog hot flashes insomnia a lot of skin issues my hair falling out I went through all of that sort of thing over the next 10 11 years as we've just been hearing for everyone it's different there isn't a sort of set path people have different symptoms at different times and also affected by other stuff that's going on in their lives and in their environment there isn't a sort of one-size-fits-all menopause journey and I guess there isn't also a one-size-fits-all cure is the wrong word isn't it but something to help you manage it, because everyone is experiencing all of these different things at different times.

6:37But I do think that it is true that healthcare tends to focus more on men in terms of research. So, for example, some people say that testosterone is also linked with brain function, but of course we tend to think about that as a male hormone and as a libido hormone. We don't think about what else it might be doing and why else women in particular may need it. And one of the interesting things about your story, Zoe, was about how in the face of all of that having to hold things together for the purposes you know of your job in quite specific circumstances but Chantequilla and Carol I wonder if you had moments where you felt like there was pressure on you to keep it together and hide those symptoms or deal with them maybe not in a public way but just in a way that compounded things and maybe made it more stressful I mean Carol did you ever had an experience like that and what do you make of Zoe's recounting what happened to her.

7:26I can empathise completely. I guess you could say, fortunately for me, I was working from home and working for myself. So I never really had to do my symptoms publicly, if you like. But I was caring for my elderly father. So I had to try to keep it together so as not to agitate him as an elderly person and try to look normal, if you like, so that I could continue to care for him. but because I chose to try to advocate for myself and I kept knocking on doors and I kept asking questions and I wouldn't stop I was able to get help eventually but in the wilderness years as I called them it was just like swimming through soup I did it was a fog all of the time yeah yeah you know trying to keep it together with you know chronic illness post-stroke and pyramidopause all happening at the same time.

8:18It's Olympic level mental gymnastics, you know, is your health, your hormones, your responsibility. And you know, I'm a mother, I'm a wife, and I'm also an employee. So I ultimately I had I had to retire from my job. For me, I have to plan everything I do. I had to conserve my energy and making lists. And sometimes it gets embarrassing. I was talking to someone earlier, how I was just having a conversation about someone and I was telling them in detail all these great things that this person was doing for me. And then they asked me the person's name and I couldn't tell them the person's name. And they're sitting there looking at me like, okay, like, you know, what's going on?

8:55And so it can be embarrassing. But what we have to realize as women is that our brain is not failing us. Our body is not betraying us and we're not losing it. We are managing neurological trauma and a hormonal transition at the same time. So, you know, what I used to feel like was a weakness. This is a strength on a science level. And I'm just here to, you know, tell other women that you're not losing. You're not losing yourself. I think there's a lot of that, isn't there? There's a lot of embarrassment around it. And, you know, my kids laugh at me when they say, can you get me the thing next to the WhatsApp over there?

9:31But actually, I don't really want to be doing that when I'm working, when I'm broadcasting, you know, when I'm talking to other adults. And a lot of women that I've been speaking to say they try and mask it, they try and hide it where they can. And that doesn't really help us either, does it? Because inevitably, like you said, you're going to forget somebody's name or you're going to forget something crucial. And it's very difficult to hide that. And what I realized, keeping it together isn't about perfection. It's about awareness. It's about management. And it's about giving yourself room to heal and room to transition.

9:58And when all else fails, I remember that I survived the strokes, the heart attack, the chronic illness, perimenopause, motherhood, marriage, everything that we have to go through as women. You know, we go through perimenopause, but we still got to go to work. We still got to we still have fibroids. We still we still have babies. You know, it's all these different things. So, yeah, you know, we just we we learn to talk to our doctors and we learn how to mitigate it. You know, rest before I get exhausted. I laugh constantly. If I don't laugh at some of this, I'd have to fight somebody and we don't have time to be in court.

10:32Shanta Quillette, Carol and my BBC colleague Zoe discussing their experiences of perimenopause. I'm James Reynolds. You're listening to The Documentary from the BBC World Service.

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12:46the Fawcett Society, found that one in 10 women have even had to leave their jobs. We're going to meet three of them now. Karen is a menopause coach in South Africa. Geet is an airline pilot in India. And Katie, here in the UK, is the author of Midlife Matters. I was a busy mum with four kids and I was working for a children's charity at the time. and I used to cope very well. But over a sort of four-year period, I started feeling a whole host of seemingly unrelated symptoms, brain fog, heart palpitations, anxiety, terrible insomnia, very depressed, and lack of sort of concentration and sort of confidence.

13:30I kept going back and forward to my doctors and they kept saying, you're just trying to do too much and maybe you should work part-time. And they kept offering me antidepressants. I eventually quit my job because I just couldn't cope at work with all the symptoms and I was worried I'd be fired and became a shell of a woman at home. I didn't have hot flushes and I was still having periods. Thankfully for me, my father, Professor Michael Baum, who's now a retired breast cancer professor, he was the one that eventually, after four years, put two and two together and said, I think this is hormone related and packed me off to see a gynecologist.

14:10And within about a 10 minute appointment, she did a blood test and said your estrogen levels are on the floor. And this is classic perimenopause, which at that time, it was a word I'd never heard of. Sounds like a nightmare. Yep, it was. It was upsetting because I was a capable woman. And suddenly I was just starting to doubt myself and I'd lost my purpose in life and I wasn't a particularly great mum, great wife. I just didn't recognise myself. I lost all joy in life. Karen, how about you? I was feeling burnt out. I was struggling with fatigue. I was gaining weight. I was the most aggressive human being you could come across.

14:52Very ratty. I felt like I wasn't coping. And I, Again, you know, I mean, similar thing, you know, I was very competent, doing really well. Yes, I had a stressful job managing big advertising campaigns, etc. But I was loving my job. And so it was really hard for me to decide to leave. And I went to my GP of 23 years. She said to me, oh, well, you're clinically depressed. And I said to her, I don't think so. and I said to her I want to do bloods and we did bloods and I was actually post-menopausal. Since then it's been a very long and traumatic journey for me but in the last three years I've been researching and studying menopause and I've become a menopause coach.

15:45In that journey of doing research I realized that actually when I left corporate I was definitely perimenopausal. So intuitively, I knew that I wanted to get healthy and I wanted to train and I wanted to lift heavy and I wanted to do all of those things. But I didn't know I didn't have those hormones. Geet, you're an airline pilot and have continued to be throughout your perimenopause. Tell us about what happened to you. I started realising that I didn't want to fly. And I fly the wide body aircraft, so I fly long haul. And my body didn't want to do that anymore. You know, transitioning, time zone crossings, night flying, long distance, ultra long haul.

16:31It didn't want to do it anymore. And I started looking for excuses to not fly. I started taking more leave. And I started asking for other work. In the meantime, I was talking to other friends who were saying that they were going through perimenopause. And just like Katie said that had not heard the term before, neither had I. And she was on a one-year break. And then I started noticing after some time that I was suddenly not having my periods anymore. And I was like, oh my God, this is the smoothest transition ever. I'm having no pain. But I wasn't actually referencing what this was. One time, I couldn't go for flights because I was leading like I was in childbirth.

17:13I visited the gynecologist, my own medical. So if you understand airline flying, you have to be 100 % physically fit to fly. but the doctor said that I was nowhere near menopause. And today I find myself that I've gone and asked for a permanent job to not fly anymore, although I've done it for so many years and I thoroughly enjoy it. So this conversation feels a little bit revealing for me that if I have to now trace back and do some investigation, yeah, it may be related to this after all, just like how Karen said that, you know, in hindsight. and there were thousands and thousands of women going through the same and I think hearing your story makes me upset and very angry because I just think if you had had in your workplace people who had been educated to act as menopause champions or your GP and gynecologist to have put two and two together with maybe like a symptom checklist you know and to talk to you about things like HRT, you'd have all that information and awareness and be able to make your own informed decision about your future because we want you well and flying planes and we want you to feel safe.

18:27And you've had such an amazing career by the sounds of it to have to give it up because of something that 51 % of the population go through makes me angry. So I guess my question to you is, is there any sort of support groups in India or is there awareness and sort of campaigning going on there, like perhaps we've started here? Our industry is still very behind in this, but I think this conversation is a good one. Not only I find that menopause reaches after a certain age, but in our line of flying, even menstruation is like a mini menopause, monthly dosages, you know, because to fly even with menstruation is a tough one for some people.

19:10But it's also like a box of chocolates. Everyone gets it differently, right? Just like menopause. Yeah. So there are actually now regulations by law in certain states in our country that are offering a leave with pay monthly basis, one to two days to women on the days of menstruation. That's amazing. I wish we had that here. I mean, that is amazing. Yes. Wow. Yeah, that is amazing. Did I answer your question? I mean, you did. And I actually wanted to ask Karen as well, what things are like in South Africa, because everyone's different and you need to make an informed decision on your own health care with an informed doctor.

19:50Half the problem is that the doctors are not informed themselves. So in South Africa, I mean, it differs in different generations. So I'm noticing that a lot more women are talking about perimenopause and menopause in the younger generations now and wanting to upskill themselves and understand what's going on with their bodies, etc. And then, of course, we have an impoverished community here where women are not educated. We have cultures where we don't even have the word for menopause. And they're very confused about what's going on with their bodies. So it's a very complicated dynamic that's occurring in the country.

20:37Sometimes I feel it's like I'm not getting anywhere. I just want to. Yeah, it's a it's a minefield, isn't it? Yeah. I think what's gone wrong, obviously, and, you know, to all the lovely men who I hope are listening, is that originally, you know, the medical school or well, medical research was written by men for male bodies. And so now we're getting to the point we have to pump money into women's research and do clinical trials with women in mind because it's not like let's have a periods and then there's a break and then we'll have menopause it's just one long line of our hormones kind of dictating our symptoms so i think it's just sorry to interrupt you but i would i found a very i remembered a very funny joke we were talking about that menstruation has the word men in it and menopause has the word men in it and it has nothing to do with men.

21:31That's such little understanding. We love men. But I wanted to ask Luke. Well, I don't jump in now. No, do, do, do. I was going to ask you about, maybe shift it away from men, but what about the workplaces? Are there more that your work and workplaces should be doing to actually accommodate women in this? Because it's going to happen to most women and they need to, I guess, accommodate that more, don't they, Katie? Yeah, absolutely. And we are making real strides here now. You know, it's in everyone's interest. The cost of the economy for women leaving at the peak of their careers, which is what I did and I'm sure lots of your listeners may have experienced.

22:13It's crazy. And so, you know, a good practice for any employer is to actually learn as much as they possibly can. And, you know, like Karen is doing, like I'm doing, there's a lot of corporate hubs now. There's people that can come in and educate. I do a lot of talks with employees and getting diversity and inclusion, HR departments to understand. And just like any, and to be honest, with any medical condition, just be an understanding employer. And if people need time off, like to go and see a doctor or to see a menopause specialist, or if they're confused about where to go to help, then it's in everyone's interest that an employer has a menopause policy in place, which isn't just a tick box piece of paper or a site on a website, which actually says this is what's available to you.

23:03And whether it's through insurance policies, if they exist, or just resources, you know, we give employers resources to signpost women. It's just in everyone's interest to keep people, you know, in employment and support them. Yeah, I think in South Africa, we are still very far behind as far as that's concerned. I mean, I've been talking about, you know, creating menopause policies, and I've looked at the UK's menopause policies, shared it with employers. I am being asked to come and speak to employees, to educate them, and that I'm really grateful for. So there is a slow shift happening, but it does actually feel like it's still, you know, them just ticking a box and saying, oh, yes, we've done that, you know.

23:50And, of course, I'm then challenging them and saying, but this isn't enough. is it even that we should be looking at starting talks and educating young girls in schools and of course it's not just the girls it's the boys too I think it's do we bring this kind of education in at a much earlier stage so that doesn't just hit you in the workplace definitely I mean that's why we were delighted to get it on the English school curriculum here but I do feel sorry for employers because obviously there's a huge amount they can do and I think the buck has to actually stop with our healthcare providers because I don't know about you two but if I had got the right diagnosis on day one we wouldn't be here having this conversation and I could have gone into my employer and said look I'm going through this I'm going to be sorted hopefully but please bear with me if I have to have the odd day off and you'd hope there'd be a good enough employer that they wouldn't sort of fire you for that simple request.

24:50Katie, Geet and Karen, before we go, we've got an update for you. The BBC's tech editor Zoe Kleinman, whose story inspired these conversations, has sent us this voice note. I can't believe how many people have got in touch with me to talk about brain fog. A lot of the messages I received talked about two things, my bravery in speaking out about it. Well, I don't feel particularly brave. Or perhaps more importantly, the fact that it normalised something that affects so many of us. I think that highlights how much shame and stigma there is around it and how lots of people choose to try to hide brain fog moments.

25:26But if I've learned one thing from sharing my experience, it's that if you get brain fog, you're definitely not alone. And if you need to hold notes like me or whatever it is that works for you, that's totally fine. Thanks again to Zoe and to all of our guests this week for sharing their experiences. I'm James Reynolds. You've been listening to The Documentary from the BBC World Service.

26:07that will have long-term consequences for the levels of greenhouse gases in the atmosphere. Wind power in the United States has been subsidised for 33 years. Solar for 25 years, that's enough! The interview from the BBC World Service. Listen now wherever you get your BBC podcasts.