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In this episode of When Work Hurts, I’m joined by Clinical Psychologist Dr Kirsty Harris, author of Coping with Endometriosis, to explore the personal, psychological and professional impact of living with this chronic condition.
Kirsty shares her own experiences of endometriosis, including the challenges of obtaining a diagnosis, navigating healthcare systems and living with chronic pain and uncertainty. We discuss how endometriosis affects much more than reproductive health, and the importance of recognising its impact on all aspects of life.
We also explore what it means to live and work with an often invisible condition, including the challenges of disclosure, self-advocacy and recognising when support or adjustments are needed. Kirsty reflects on her own experiences of navigating professional identity alongside chronic illness, and what employers and healthcare professionals can do to provide more compassionate and effective support.
Our conversation considers the psychological impact of living with endometriosis, including experiences of shame, self-stigma and the pressure to keep going despite significant difficulties. Kirsty explains how Compassion Focused Therapy can offer a different way of responding to pain, distress and uncertainty, helping us relate to ourselves with greater kindness and understanding.
Finally, we talk about Kirsty’s experience of writing Coping with Endometriosis, the importance of community and shared experiences, and how telling our stories can help challenge stigma and bring about change.
Useful links:
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Endometriosis UK – Information, advocacy and support
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Wellbeing of Women UK – Women’s reproductive and gynaecological health charity
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Menstrual Health Project – Education, awareness and practical resources
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The Compassionate Mind Foundation – Resources on compassion-focused approaches
I’d love to connect with you so please come and say hi on LinkedIn or via my website.
The Coping With series is available via Sequoia Books and Routledge. ACP-UK members receive a discount on all ACP-UK titles – details are in the monthly members’ newsletter, The Buzz.
Do check out the ACP-UK and everything it has to offer.
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Transcript
Paula Redmond (00:04)
Hi, I’m Dr Paula Redmond, and you’re listening to the When Work Hurts podcast, which is brought to you by the Association of Clinical Psychologists, the representative professional body for clinical psychologists in the UK. In this series, I’ll be exploring the intersection of the personal and professional through conversation with clinical psychologists who have written about challenging life events and circumstances that they faced in the Coping With book series. We’ll be thinking about how these experiences affected them as professionals and how their professional roles and identities have intertwined with these challenges, as well as the wisdom, expertise and guidance they’ve shared with readers.
In this episode, I’m joined by Dr Kirsty Harris, clinical psychologist and author of Coping with Endometriosis. We explore the often hidden impact of living and working with a chronic condition, from the challenges of getting a diagnosis and navigating healthcare systems to deciding when and how to disclose difficulties at work. Kirsty also shares how compassion-focused approaches can help with the pain, shame and uncertainty of living with endometriosis, and what employers and healthcare professionals can do to offer better support. We began by talking about what led Kirsty to write the book.
Kirsty Harris (01:30)
So it was one of those things that I suppose you daydream about, maybe one day I’ll write a book, maybe that would be helpful. And people used to say to me, like, I remember at university, someone was like, you ought to write a book, you know, as I, when I would tell people about different experiences and things. And I often thought that if I was able to put my experience out there in some way and my knowledge out there in some way, it might be helpful for other people. I really think that it’s sharing knowledge and sharing stories that create change and that are a mechanism for change. But I really didn’t know how to do that. And lots of the ways I saw people doing that were very, I would say, difficult for me or I felt very uncomfortable with. So like social media being the most dominant way of sharing lived experience, but I didn’t really feel that that aligned with my professional role. And I had lots of questions about if I was to do it in that manner, what would that mean for my role and how would that work? And then I saw an advert through the Association of Clinical Psychologists saying, do you want to write a book about your… and they were looking for people who’d got a lived experience of a certain difficulty or problem or whatever it was and were clinical psychologists. And it was quite a broad advert. You could bring anything that married both experienced by profession with your lived experience. And I thought maybe that’s the opportunity. It also took away a lot of the things that I really didn’t understand, like how to get a publisher, where to start this thing from, etc. So it created like a structure which I needed, created some security work that I needed, but it also created a community. And I’m very much like, a believer in having that community around you. So there were other authors that I could connect with and then there was a bit of support behind the book that also then gives you a bit of motivation to do it, that you’re going to meetings with other people and having conversations about your book. So it kind of has to happen once you’ve made that commitment. So I set the time aside and just kind of slowly started working through it. And even when my book proposal was accepted, I still really had no idea how this book was going to look or whether it was going to be helpful, what was going to go in it. So it really was an evolving thing and a very personal experience to kind of put it on paper. And what I kept coming back to as I went through the book and struggled at various points, as I think many of us did writing our books, was I was trying to write the book that I wanted when I was say 18, 20 years old. And in some ways that caused challenge with my professional identity because I kept thinking, well, if another psychologist reads it, have I explained this well enough or put enough research in or done this? But I kept going back to it’s not written for other professionals, it’s written for women living with this and they need to understand it. So that’s how I kind of got through the writing and came to do it a little bit at a time.
Paula Redmond (05:01)
And I think for me, what really came across in your book was this kind of holding on the one hand, like the really incredible suffering that you experienced and you lay that out, you know, quite early on in the kind of timeline. And it’s a tough read to read what you went through. It’s, you know, a lot of… a lot of suffering, which I can relate to a little bit because I also have had endometriosis. I was lucky enough to have a laparoscopy and treatment when I was 19, which was really transformative and I think saved me a lot of suffering. So there’s that, this kind of real, like the bare bones of the reality of living with a condition like this, but also written in such a compassionate way. You know, even just from the first page, your kind of dedication bit is so lovely, you know, your tagline is bringing compassion to pain, shame and uncertainty, which I think was really lovely. And it is an absolute masterclass in compassion-focused therapy, this book for sure. You really kind of outline in a really accessible way, what CFT is, you know, how that’s applicable, and take the reader through making sense of endometriosis from that lens. I learned a lot reading it just about endometriosis and about, you know, ways of relating to that, but also about CFT. So it was, so thank you.
Kirsty Harris (06:51)
That’s great. That’s all right. Thank you. Thank you for reading it.
Paula Redmond (06:55)
So I guess people listening might not be very familiar with endometriosis. So I wonder if you could just tell us some of the basics around that and what your experience has been?
Kirsty Harris (07:07)
Yeah, so endometriosis is a condition that impacts people who are assigned female at birth. And it’s a condition where cells like the lining of the womb, so similar but not the same, are found elsewhere in the body. And those cells can be found anywhere in the body, which is why endometriosis is a whole body condition, not a period problem, which I refer to in my book. And those cells that are found elsewhere may become inflamed, they can bleed, they can cause all kinds of problems in different places. So that can have a massive impact on an individual’s life for a duration of their life. Some people think it stops when you get to the menopause, it doesn’t necessarily, depending on what’s happened when you’ve lived with it. So the impact of it is really beyond, I think, what people understand and can be quite frightening if you’re newly discovering endometriosis or thinking that you might have it. So for me I didn’t know what it was for a long long time, so I started going to the doctors. The first time I went to the doctors I was 12, my mum took me to the doctors about my periods and I think for a lot of people when you start going to the doctors it is because of your periods because a lot of endometriosis symptoms are gynaecological. And if you think you’ve got endometriosis, initially you’re likely to be seen by a gynaecologist. So when I first started going, it was very much like it’s problem periods. And that was the diagnosis to some extent, that it was problem periods. And the difficulty with that is you don’t know whether the problem is the period or the problem is you. And that’s really the theme for me through my whole journey is I kept getting told that I had these problem periods, but what the problem with my periods was, wasn’t actually diagnosed properly for 20 years. So I didn’t get that validation and that information that I needed for a really, really long time. And that’s not uncommon, average time for diagnosis in the UK for eight, nine years. But there’s lots and lots of people who’ve waited much longer than that, certainly for a confirmed diagnosis. So the word endometriosis started getting used much earlier in my journey, but I didn’t know for sure until much later. That dilemma between what is the problem? Is it the period or is it your ability to cope with the period, really form the foundation for a lot of the things that became really, really difficult for me. It’s also an incurable condition. So again, people think, well, if your period stops, be it through menopause or through surgery or for another reason, then the problem will go away. But actually, endometriosis doesn’t go away. It will still be there. Hopefully your symptoms will be well managed or they may be reduced, but there is no cure for it. And I think when I was writing the book and I was trying to think of the title, I really wanted something that was reflective of that. A lot of the books that I had come across were about managing, or to some extent, not curing, but significantly reducing the disease, be it through, there was lots of magical remedies in all kinds of places, you know, different things that if you did this, it would stop that or whatever it was. My book really isn’t about that. It’s about the fact that actually the condition is the condition. It’s incredibly difficult to live with. There are certainly medical treatments and interventions and help you can get, but all of that material is already out there. You can access that. It needs to be done through somebody with a different set of expertise to me. This is about the fact that we, regardless of your treatment, you’re still living with the psychological impact. And I think that is lifelong, even if like yourself, you access treatment early.
Paula Redmond (11:22)
Having read your experience, the extent of the impact on you was enormous and affected all kinds of areas of your life. And it’s not just during your period, as you were saying, it’s really extensive, beyond that window and really pervasive and far reaching impact. It’s quite hard to sort of overestimate how debilitating this experience was, this condition has been for you. And that in contrast with the care and help and recognition and validation you received was very striking as well, that as you said, it took you 20 years to get validation. Like what sense do you make of that, how do you understand that it’s so difficult for people to be diagnosed?
Kirsty Harris (12:28)
I think there’s many reasons and I think for me, you know, the journey started 20 years ago and I hope that people starting their journey now are going to get very different experiences. I hope, you know, I think some of it is a product of its time, that the awareness wasn’t there. And I think there were GPs and people that I approached who genuinely didn’t know, genuinely didn’t have a clue. So when you read back, read it back now, you think, well, why did they not give you more information or why did they say, it’s probably because you’re tall or maybe you’ve got quite a low pain threshold. But I think they were just trying to offer an explanation in the absence of something that they really understood. So I think some of it was a lack of knowledge and a lack of awareness. I think some of it was real difficulty advocating for myself. But that became, in CFT terms, a kind of tricky loop or a self-fulfilling prophecy, if you like, because you go to the doctors with your difficulty, you say what your difficulty is, the doctor kind of says, well, lots of people have that problem, or it probably go away as you get older, or whatever felt like million and one reasons that it wasn’t really as big a deal as perhaps I thought. And then over time, you start to internalize that. I think it’s less that you don’t advocate well, you don’t think you have anything to advocate for because I began to believe, I have got a low pain threshold, I’m not coping well with the same problem that everybody else has. It became all about me as an individual. So then I had long periods of time where I didn’t go to the doctor because I didn’t see the point. I’d been and the doctor had told me this was normal. So why would I then go to the doctor again unless a new symptom emerged? And obviously what happens with endometriosis is it can for some people worsen over time, which is what happened to me. It got worse over time. So I’d have a period of time and it would be kind of static and then something would happen, it’d get worse. And I might then go back to the doctor again, but then the focus would be on that new problem. And when you look in the book about all the different symptoms you can have. And if you’ve ever been to the GP, you know, they only deal with one problem at a time. And so if you go in with a UTI, then they’ll treat the UTI. And then you go and need the UTI again, they’ll treat the, which is urinary infection, so they’ll treat that again. And I went in with lots of UTIs. And that kind of was one problem. And then I went in with my problem periods. And that was another problem. And then I went in with back pain. And that was another problem. And each one of those things got treated, but those things didn’t get put together until much, much later. So I think some of it is a genuine lack of knowledge. I think some of it is the ability to sit and look at somebody as a whole person and have the time to do that. And I think some of it is my own lack of knowledge and my own self stigma about what I was experiencing and how difficult that was, but also thinking that it wasn’t really that difficult because I thought everybody was living with the same thing. It was a long time before I realised that they weren’t.
Paula Redmond (15:54)
Yeah. And thinking about the context of this podcast, how having endometriosis impacted your working life and your working identity. Can you say a little bit about what the impact of that has been?
Kirsty Harris (16:12)
I think preparing for this podcast, I was thinking about this a lot. And I think one of the reasons it was really difficult to answer is because the endometriosis came first, long before I even knew what a psychologist was, let alone sort of considered the profession. So that was kind of always there. And I’ve thought, you know, did it impact my decision to become a psychologist? I don’t think it did consciously. But I think if you’ve known what it is to experience pain or suffering, maybe that does lead you towards a profession that wants to alleviate that and wants to do some good in that. So I think there probably was some unconscious processes at play as to why I entered a helping profession. But I don’t think endometriosis was the only contributing factor to that. But when I did come into the profession, I think I came in at a time where certainly when I trained, lived experience wasn’t a term that was being used. We had service user involvement then, but it was still very much a sense that there were service users and there were clinical psychologists and there were healthcare professionals. There wasn’t so much of a sense of those people being the same thing. So I didn’t really get a message that you could integrate those two parts of your identity. So I tried very hard for a long time not to and to develop a professional identity that was free from what felt like complication at that time, that it would complicate my professional identity and might be something that was unwanted within the profession. Everybody had very different views on it going back then and I’m sure people that have been qualified longer than me might have their own experiences of that. I also like trying to get into clinical psychology was so competitive. It was the year that the training places reduced, was the year I applied for training. So again, there was a real sense of competitiveness and being an assistant, I was an assistant in a big private hospital, which was very helpful in a way. But the downside of that is I was around a lot of other assistants who were all trying to get the same places on training. So anything that was going to hold me back from that, prevent that felt really threatening and unsafe, unsafe to disclose, unsafe to acknowledge. But I think that was probably the worst point in my life in terms of managing my health was the assistant psychologist trying to get onto training partly because I was unrelenting in my commitment to try and further myself in the profession, and that was really detrimental to my health and wellbeing. And even though I had this experience where I became incredibly unwell because I wasn’t, I was working too much and I wasn’t taking care of my health and I wasn’t seeking support. And I became really, really unwell and was admitted to the high dependency unit with really serious infection and became dangerously unwell. And even as I was dangerously unwell in hospital, I was begging my mum to bring my textbooks in because the applications for training were due. And I was like, please, can you bring my books? My mum refused very wisely. But the idea that I was going to lose time to get into the profession or to prepare for training or whatever was, was unbelievably threatening. So I think the sense of not being good enough was also influenced by trying to be a clinical psychologist and it was only when I became a clinical psychologist and I’d been a qualified clinical psychologist for some time that I felt able to start saying I am both somebody with endometriosis and somebody who has suffered and a clinical psychologist and I can be good enough whilst publicly being both and that continues to be a real journey, particularly as you said, like in the book, I start the book with a timeline and it feels like knowing somebody’s read that coming into the interview, knowing that you’ve read it, sometimes I’ll meet service users that read it or other colleagues that have read it, there’s something about that that feels really vulnerable and I think it took a long time post qualification, it took the… I think the landscape of clinical psychology has changed. I think having the Association of Clinical Psychologists willing to get behind a book like this and get behind a series like this took all of that for me to really feel that I could bring this to work.
Paula Redmond (21:18)
And yeah, you mentioned that experience when you were an assistant and it’s, yeah, that’s a tough read to hear about. You really, you know, dangerously, like really fighting for your life. And there’s a part of you still thinking about the form, you know, the application form. And that was really striking, but it’s, it’s really interesting to hear you say about how things have shifted, maybe that there has been a shift and obviously writing a book in such a personal way is a, you know, the one end of disclosure that’s very public. Could you say a little bit more about your experiences of starting to talk about it at work and what that was like and what you needed to sort of consider in who and how and when you would talk about it?
Kirsty Harris (22:18)
I think initially I didn’t talk about all of it. Again, I kind of mirrored what my GP was doing, which was when there was a problem, so I needed to take sickness, then I would tell my supervisor or line manager or whoever it was what the problem was. And a lot of the problems felt more acceptable than the underlying diagnosis. So what I really felt uncomfortable with was talking to people about my periods and talking to people about having a period problem. That felt really exposing and embarrassing and really fed that idea that they were going to turn around and say, well, if everybody has periods, you’re not the only one, that’s not a good enough reason for you to need a break, need a sick day or to see a doctor or… So it felt impossible to talk about my periods to anybody at work. It felt even more difficult talking to male supervisors, and I had a lot of male supervisors. In fact, the first as an assistant, you know, the majority of my supervisors were male. And then again, as a qualified, I had male supervisors. And when I was younger, you know, you didn’t talk to men about your periods. Our sex education was separate. You know, you were separated from men and boys in having those conversations. So it just felt really difficult to talk to anyone about my periods. I’d talk to them, you know, if I got an infection, I needed antibiotics, I’d say, I’ve got an infection, I need antibiotics, I’m going to be off work for that reason. Or if I’d got to go into hospital for something, I’d say, I’ve got to go to hospital for this. I just avoided anything to do with gynaecological issues or problems really or having that conversation and I really avoided that the majority of my career. I would say it was only after sort of I came back after having had my daughter which was 10 years ago now and I then knew that I had endometriosis. It was once I knew I’d got endometriosis before I’d got the diagnosis but I knew I was confident enough to think this is what this is. And I’ve moved away from the idea that this was a problem period that I was coping badly with. And once I knew that in my gut, if you like, that it was endometriosis, I started to feel like that was the justification to bring it up. It felt legitimate. And as psychologists, we talk a lot about diagnosis and the value of diagnosis and all these things. But for me, having a label that I knew my supervisor could go away and Google if they wanted to really helped. And I almost set myself a bit of a challenge to tell a supervisor about it, who again happened to be a male supervisor. And it was, I waited for something like an appraisal or like one of the yearly meetings, not just a normal supervision where I knew I was going to be asked about my wellbeing. And I’d almost like, prepared what I was going to say to disclose my diagnosis. It felt like this monumental moment. And I did. And the supervisor was very compassionate and understanding. And then we moved on. And I was like, that was it. Like none of the things that I’d imagined for a really long time happened. And in the nicest possible way, like the supervisor wasn’t that interested, like they were interested, they responded really kindly and gave me all the options that you could have to support you at work and said they were very open to hearing about it and acknowledged that it might be difficult to talk to them about it and all those things. But they didn’t, they didn’t want to know all the details of it or all the things. You know, I’m going in ready to prove that it really is a proper thing and I really do have it and it really does affect me and here’s all the evidence. And I think that’s the other thing that happened through this journey is every single conversation I was prepared for a fight. Every disclosure I’m prepared for a battle. Even in writing the book, there was that, was my experience bad enough? Is it going to show enough? Do I have enough of the complete, you know, because it’s still there. That worry is still there. And it wasn’t a battle at all. It wasn’t. And that’s again somewhere where I started to get some shift and think, OK, this doesn’t have to be a massive thing. So that was really interesting. I think the other place I sometimes get asked about is obviously disclosure and therapy, because I work predominantly with women. And interestingly, somewhere I still tend not to bring it up. If people have found the book or they’ve found a podcast or open a conversation, but I tend not to disclose it within therapy without a lot of careful consideration. And I think, again, people think if you’ve written a book, then you’re probably really open to telling people. But there’s a real shift that happens when you’re telling somebody something in a room, as opposed to them having found information. So that’s still like, a very much case by case thing. But my supervisors find out about it, because it’s out there now.
Paula Redmond (28:08)
And I was just struck by the sort of the weight of that, you know, of carrying is, and I guess as you describe in the book, like the threat activation around, you know, these conversations and that dilemma of, you know, well, if, know, if you don’t have that conversation, then you’re, there’s a battle because you’ve got to, you know, be on your own with it and, and, you know, manage. But if you do have the conversation, that’s potentially a threatening situation and what you might face and like, really heavy to carry alongside just the condition itself.
Kirsty Harris (28:48)
And I think like for me, you know, white woman from Western culture, so to be able to have this conversation, yes, it was difficult, but there’s lots of other factors at play, you know, for lots of lots of people living with this, that might mean that you still can’t have the conversation or it still doesn’t feel okay to have the conversation because it is linked to something that feels really, it is very personal and still has, I think, a degree of shame. When I was researching the book, it was really striking looking at some of the literature, particularly in young people, about how many people are embarrassed to talk about their periods. Huge numbers of people remain embarrassed. There’s still a lot of young people who find it disgusting to talk about their periods or their menstrual health. And that, again, I think makes it really, really difficult to start these conversations, it does feel like you’re bringing up something that might be really controversial or really ill-received. I think also, that you don’t just disclose it once, like you can bring it up and then to some extent you’re waiting on the other person as to whether they ever bring it up again. And if they don’t, then sometimes that means that you will never bring it up again. And you went through all of that distress and difficulty to maybe feel like you didn’t really gain anything. And I went through that a lot. Or you bring it up and then people don’t ask about you all the time and you don’t want them to ask about it all the time. But then you’ve got when the next thing comes along. And for me, endometriosis did feel like a constant, what’s the next thing that’s going to happen? To some extent it still feels like that, then you’d have to bring it up again. And there’d still be for me that sense of have they remembered? Do they know what this is? Do they know that the problem I’ve got now is still linked to having endometriosis or not? So it’s a never ending kind of conversation. I think that’s the same with a lot of chronic health conditions, you need to keep revisiting them, but you also don’t want to be defined by them. So the balance is really tricky.
Paula Redmond (31:07)
And it’s, it’s also really striking because I mean, I think I had, you know, from my own experience, the statistic in my head that one in 10 women have endometriosis, which is a lot of people. But you also mentioned some other stats in the book that I wasn’t aware of, about the real, like really tangible impacts on people’s careers and finances. And could you outline some of those?
Kirsty Harris (31:36)
Yeah, so we know that the cost to the economy of women living with endometriosis is 8.6 billion. So it’s a significant amount of money. And a lot of that is due to difficulties staying in work or being able to work, being able to progress in your career, time off work, etc. Many systems, work systems aren’t really set up for chronic health conditions, in my opinion. So I think the statistics from Endometriosis UK are one in six women have left work as a result of their endometriosis symptoms. And I think that is in part because it’s so unpredictable and so difficult to manage. You need a lot of flexibility, which a lot of systems don’t offer. I think also there’s that self stigma bit of, you know, if I’d have gone off work every time I was in pain, I would never have worked. And it wasn’t until after my hysterectomy that I really understood how much pain I’d lived in for so long, because my hysterectomy for me was transformative, a bit like your operation. And I understood for the first time in a really long time what it meant to not be in pain. Because I was always in pain, but to the point that I didn’t even know I was in pain because that was the norm. So the idea that I wouldn’t go to work if I was in pain, like people say, you ought to give yourself some time, take a day off. And I think, well, what was, what’s the point? Because it’s not going to get any better. It’s not going to go away. And I had that recovery model, like, really entrenched in my psyche that you take time off so you can get better. And then if you’re not going to get better, what’s the point in having the time off? You either work or you don’t. So that, again, that pressure, that self criticism, unrelenting standard stuff of, you just got to keep working. You just got to get on with it was, was phenomenal. And I think that’s there for a lot of people. And I think if you’re in employment, that you can’t get the flexibility that you need or you have to keep having these conversations over and over again with people that might not understand the impact of that on your mental health and your wellbeing as well as the physical impact that you’re living with. I think it’s just really difficult for people to manage and I wonder if that’s part of the reason that for many people they’re not able to continue working. I think also for us we work in a profession where we show up for other people. We make a living being there for other people. Again, if you’ve a kind of desperate, you know, a desperate sense to help or inflated sense of responsibility for others and you you’re not well, and this can be like you get cold or flu or I’m sure there’s lots of people out there that will relate to this and you know, you’ve got to cancel five people’s appointments and you know, one of those people might have waited four months for that appointment and you know you’re not going to be able to reschedule it for another two months. The pressure of that as an individual, I think, in the NHS again is huge. And if you would have got to do that every month, every couple of weeks, I think for me, it was knowing that other people then were going to be disadvantaged by me not being there. And that again, I couldn’t reconcile with that. So I would put my own needs last and I would work unless I thought I was going to cause harm to somebody else by working. So my priority was always will I cause that other individual harm or am I not going to be able to pay attention or show up for them? And if I could, but I’ve got to take painkillers or wear an extra pad or wear black trousers or do the appointment online or if it then I would do it all of that would come first before the question. But what about any harm I’m causing to myself? What do I need? Yeah that, for the early stages of my career, I don’t think I ever asked that question.
Paula Redmond (36:24)
And I know, again, from your book, it’s very super informative, that there have been some kind of legal shifts recently, which are requiring employers to have policies around endometriosis, which feels really positive. And I wonder if, yeah, be curious to hear what your take is on that shift and what kind of difference that could have made for you, know, what would have helped? Because those are, you know, I hear, as you say, I hear that a lot from, you know, the medics and, you know, health professionals and psychologists that I work with, you know, around, you know, burnout and illness, and the kind of worry about patients, but also about colleagues who are often already understaffed, overstretched, you know, that they’re letting colleagues down if they take time off. It’s really, really tough, these systems that are not built with capacity for people with human bodies and life stages. So what’s your take of this shift and what difference that could make to people now? What could have helped you?
Kirsty Harris (37:39)
I think, you know, when I was writing the book and reading about these things, I was thinking, yes, like we need all of this. So Endometriosis UK have a scheme where they look for endometriosis friendly employers, which involves training for people, you know, that there, which will help with line management and conversations within the workplace, but also thinking about specific adaptations to policies and ways that that can be supported within the workplace. And obviously we’ve got disability act and one of the questions I sometimes get asked is does endometriosis class as a disability and actually you know having the condition itself is a spectrum it’s massive so some people where you can have you can have endometriosis and not know you’ve got endometriosis and you might find out through some other reason or means or whatever or you might find out you know much later down the road you’ve had it for a long time. And there are some people who are really impaired by living with endometriosis and it’s had lots of impacts in lots of other ways. So for me, the focus within the book was that self stigma and self criticism and starting to be able to say, actually, I have needs and there are things that I have to do to live my life effectively that are different to other people. And it’s that acceptance that I think creates the change. Yes, you need that from the people that you’re working for and with and you need that from people around you. But do they need to understand everything about endometriosis? No, I don’t think so. I think they need to understand what it is to live with a chronic health issue. And I think this would be helpful for anyone with a chronic health issue. But the hardest bit, I think, is actually starting to look at the way you live your life and acknowledge that some of those things possibly are disabilities. And this for me came about when we were going, we went on a family trip to Disneyland Paris. My daughter was little and probably my symptoms were some of the worst that they’ve been for a very, very long time. And I still wouldn’t have said that I’d got a disability or that my endometriosis impacted on me. So we planned the trip and there were things that we had done in the knowledge that I would find things difficult. We booked a hotel that was nearer. We booked travel that was easier. You know, there were adaptations that we just naturally made because we knew I’d be in pain or we knew that this would happen or whatever. Didn’t even think about it. And we went to the trip and the first day there’s a lot of walking in these places. So we did the first day and I walked and by the end of the day I could barely move. I was in agonising pain. And we’d got another two or three days of the trip and I could not manage the pain and be able to be there. And my husband, very black and white sensible, said, well, we’ll hire a wheelchair. Having to hire a wheelchair was a real step for me psychologically in what it meant. And the reason I was able to do that is because I’d been on a bit of a journey by then, I’d had some therapy, I’ve got a bit of a better understanding of things. But also I’d got my daughter and in order to do the trip with my daughter, I had to use the wheelchair. It was that simple. I either wasn’t going to be able to go and see the things that she wanted to see and I wasn’t going to be able to be there, I was going to have to stay in the hotel or I was going to have to have a wheelchair. And I had the wheelchair. And that was the point in my life where I needed a wheelchair, I needed a walking stick, needed, you know, my mobility wasn’t typical anymore. And then my husband, when we got back, he said, look, we really need to think about this. And we sat and kind of made almost like a list of all the things, all the adaptations in life that we were making. And that’s when I realized that it was a disability. That’s when I realised that actually by definition I was disabled by it. And I think it’s that shift, if people can make that shift, if it is having that level of impact on your life, then you are making those adaptations and you’re going to work with heating pads hidden under your clothes because you don’t want people to know and you’re doing all these things. Actually, I would really want people to say, now, I need help with this. I’m having to make these adaptations. This has this impact on my life and you are deserving and needing of support from work. And if you can lean into hopefully somebody who will be compassionate and help you with that, then that will make it easier than carrying it all on your own. Whereas for me, I carried it all on my own because I didn’t want to have to tell anyone everything from it’s in the book, like I remember with one of my supervisors, I would take a coat to every supervision, like a really thick padded coat to sit on in case I got my period or bled through my clothes. I would wear black trousers and sit on a coat because they had a really lightly coloured chair in the supervision room. So that anxiety all the time, every single decision. And I think actually starting to say, no, I have needs, this is what they are. It doesn’t make me less of a person. It doesn’t make me less valuable. It doesn’t make me not good enough. It makes me somebody who needs this support and that’s okay. I think that’s what will make the difference in the workplace, in life, in relationships, in all of those things. We’ve just got to hope that workplaces meet people where they’re at.
Paula Redmond (43:36)
Yeah, when you started talking and you said, you know, to be able to say, am someone who has needs, like even that, you know, and we know like as psychologists that, that is a thing that everyone, you know, could say about themselves, but actually to say it about yourself as a health professional feels really profound. And I know people really struggle with that. Also in a context that does that, struggles with that. And when those two meeting, it is a recipe, isn’t it, for people to be, these systems are often functioning on that subjugation of need of the workforce.
Kirsty Harris (44:21)
And it didn’t make it into the book because of the, you know, page limits and type of stuff. But I did a lot of research into mental health and health care professionals. And a few years ago, there was a picture, somebody posted a picture where they’d bled through their scrubs. So they’d come on to their period during surgery, I believe. So they were a surgeon and they bled through their scrubs and they posted this picture and it led to a huge amount of conversation about actually what that’s like being in a health care setting, particularly for nursing staff and surgeons who might be unable to leave an operating room and come onto their period during that time. And again, as you say, like, it’s difficult. I remember working in secure units. Like if you needed the toilet, you’d got to get through four locked doors. It wasn’t a two minute job just to nip into the loo or whatever. You know, you couldn’t carry things around easily. So all of these layers of like, trying to manage even typical menstrual health without endometriosis or other gynaecological conditions in healthcare settings can be really, really difficult. And I think a lot of people, again, will prioritise the wellbeing of their patient, their service user or whoever it is. But I think starting to have these conversations and knowing that there needs to be a balance, what that balance needs to look like, and also being able to say, I need to go to the toilet because I think I’ve just got my period. Again, it evokes a different sort of understanding, whereas I think for me, that would have evoked fear and shame and fear of rejection and judgment. Whereas now I think in some settings, not in all settings, but in some settings, I hope you’d go, okay, fair enough. You wouldn’t give it a second thought.
Paula Redmond (46:15)
Yeah. And I’m curious, Kirstie, about how, and I know it’s interesting what you said about this, know, endometriosis being around before your identity as a psychologist. So it’s very difficult to tease that apart. But I was thinking about some of the interactions you described with health professionals, you know, some very, very awful things that you experienced. There’s one that’s really stayed with me about when you, you know, you were so unwell, you had to call an ambulance and they wouldn’t help you down the stairs and you had to like crawl down the stairs and you caught one rolling their eyes. You’re one of the paramedics rolling their eyes. and I guess I wonder how it has been for you as a health professional, you know, how you relate to that response from fellow healthcare professionals?
Kirsty Harris (47:10)
I think when I was writing the book, lots of people said that’s so awful and I feel so angry for you or I feel so sad for you or I can’t believe that that happened. And interestingly, I don’t think I’ve ever felt particularly angry with healthcare professionals. And I wonder if that is because I am one. Like I know how easy it is to say the wrong thing or lack knowledge in an area or be having a bad day or so if anything I think it’s probably made me more compassionate to the people that have cared for me in ways that I believe should have been different. The downside of that is I think I then don’t advocate very well because I’m quite frequently finding explanations for why this person or the GP was really harassed and they were running late. And obviously, that might have been why they didn’t miss. A psychologist loves to formulate everything. So we’re, you know, we love to formulate things. And that’s fine. But I think sometimes, maybe it’s also been a barrier to really saying this wasn’t okay, and something different should have happened here. But I think it’s because I’m a healthcare professional that I do understand how mistakes can get made. When I was writing the book, a colleague was reading it for me, being very helpful. And they did sort of say, are you sure you want to say all this about health care professionals? Because in no way am I here to have a go at health care professionals. But I have put it in because I think we do have to know this, how easy it is, how a small thing, that paramedic probably didn’t even know that they didn’t consciously know that they rolled their eyes, certainly won’t remember it, certainly won’t remember me. Like, I don’t think that it will have registered on their, you know, life journey in the way that it did for me. But I think that’s why we have to talk about it, because that seemingly small thing does register for people. And when you’re going to the doctors again and again and again, and you’re having experience after experience, and mistakes often get made, often got made for me anyway. Some of the things that I had were the result of actions that weren’t taken or could have been taken differently or whatever. And you’re going round and round around this for years. You’ll see a lot of people who only see you once, but for you, they’re a part of something that has gone on forever, seemingly forever, since you were child. And I think it’s that, that we have to remember. And that’s what I try and remember with people coming in to me, particularly now, you know, where I might see people less often. There are people that I only see once now and trying to remember that it’s only once for me, but it’s a lot more than once for them. But I think I feel very compassionate to the healthcare professionals that I’d seen. The other thing that was interesting when I did write the book and people started talking to me about it, healthcare professionals would talk to me not knowing that it was a lived experience book. And because they obviously hadn’t read it. And what I learned from that, is that some healthcare professionals were sharing with me that endometriosis patients are incredibly difficult, incredibly difficult to treat, they’re very difficult to manage. And that I did feel a bit angry about when I first got told because in mental health there are equivalent groups who I think carry a stigma and I realised that perhaps endometriosis patients might have a narrative around them that I hadn’t been aware of.
Paula Redmond (51:04)
So that’s interesting that endometriosis patients are difficult to treat and endometriosis patients are difficult to manage, rather than endometriosis is difficult to treat, difficult to manage and much more difficult to live with.
Kirsty Harris (51:20)
Yeah, and, you know, I’ve met professionals who use both narratives. But do know what, as an endometriosis patient, as an endometriosis patient who could be compassionate to herself, who could show up, who could advocate, who could stand and ask for something different, I think I am really difficult. And I’m okay with that. Like, I’m really okay with that. But I wonder if also I always knew that there was an element of that, although it was never named, I always had that sense that this was difficult. And I think again, if we can go, yeah, it is difficult. It is difficult, but that doesn’t mean it can be ignored or forgotten about. And interestingly, think with healthcare professionals, that’s now what I will say to people, yeah, it is difficult. And I also think it’s difficult for healthcare professionals to have conditions that aren’t easily treated and don’t fit within a recovery model and have all of this sadness within them, you know, and you might not know how to help. And that’s okay to say, actually, this is difficult for me too, as a healthcare professional. It’s also one of the reasons why I don’t specialize in endometriosis as a clinical psychologist. So a lot of people say, do you work with endometriosis patients or service users? And I don’t, partly because I know or I feel that in terms of that, like you’re saying, work, personal balance, I think that one would be really hard to hold because I think the compassion for people knowing what that’s like, I hope it would keep me away from some of the difficulties that I experienced in healthcare professionals, but I also think for me it would be really, really hard to sit with that but also remember that all the time.
Paula Redmond (53:20)
Yeah, it’s a really important point, isn’t it, about those kind of choices that we might make about where we take our careers and how much of that is informed by our personal experience and when, where those boundaries are. And that some people in some circumstances have less choice about what types of clients they work with and when they are able to step away. What would you say to kind of employers listening, you know, colleagues who might be working with someone who has endometriosis, what message would you like them to take away?
Kirsty Harris (53:55)
Employers, I think, is be flexible and see the value that these people bring and that we bring and try and be collaborative in how to make that work. I think as a line manager or employer, you’ve got to think outside the box and ask yourself, does it really matter? Like if somebody needs to work different hours or they need to have more flexy days or, but you know, they’re gonna get that work done. They are conscientious. Does it really matter if you make an edit? Because I think we can all get stuck in, we work in this way or we do this or we do that. Do you have to? Could you do it differently? Because if you can, you’ll get something probably quite incredible that you will otherwise lose. And you will also give somebody something. You will give somebody hope. And that’s worth a lot if you can do that. So everybody will have a limit of how flexible they can be, but push it to the limit if you can. So that’s probably for the bit for employers. And you said other healthcare professionals, people trying to work with people with endometriosis. I think that’s a bit of radical acceptance. I think we all get pulled towards trying to make things better. There must be a part of it that perhaps isn’t that bad. The yes buts. Yes but you have this difficulty around your period but maybe there’s other times of the month where we can think about how you can enhance your life or we can, you know, like we’d always try and find something that we can focus in on and bring out some good and some positivity and that is important. But actually, I think with endometriosis, what you need is a bit of radical acceptance. This person in front of you is probably in pain every single day. So if you ask them, well, let’s think about a time where you don’t feel like that. They’re probably not going to answer that because that time might not exist. So let’s go with, okay, this person always has this degree of difficulty, and how can we help them to still feel valuable and good enough and within that, how can we allow them to take the time that they need without the guilt and the shame and all of those difficulties because actually rather than maybe working with somebody to do more or to find positives, you’re probably trying to work with somebody to help them, to some extent do less, take time, slow down, still feel okay in doing that. So I think a bit of radical acceptance that you’re not gonna be able to change that bit, but you can do an awful lot to help in other ways.
Paula Redmond (57:05)
And I think that was for me one of like a key message of your book around the role of psychology more broadly in this space, where you said about psychology not being a cure for endometriosis, but being able to, as quoting, help manage your suffering with care and connection rather than self-criticism and self-destruction. That felt really important.
Kirsty Harris (57:32)
I think the key bit is, please ask people about their menstrual health. If you are working with somebody who was assigned female at birth, whatever context you are in, even if you’re not working in a particularly female-focused, gynae-focused context, if you are working with somebody who was assigned female at birth, ask them about their menstrual health and have a basic understanding of how menstrual health works. If you don’t ask about that, that is a massive part of somebody’s existence that you will miss. So when you are formulating, people assigned female at birth work on a cycle, their physical body works on a cycle. And we’re doing this a lot more for menopause now. You’re seeing this come up in the menopause movement, menopause space, that’s gathering traction really quickly. Gynecological health, menstrual health is there, but it’s not gathering traction from what I can see in the same way that menopause space is. They’re related. People who go into menopause lived with menstrual health from periods from all of the time before the menopause. Ask about it. Integrate it into your formulation. Help people to manage it. Because it’s there. We just might not be asking about it.
Paula Redmond (59:03)
Kirsty, I wonder for people who are listening who may be really struggling with endometriosis themselves, what would you really want people to hear?
Kirsty Harris (59:12)
I think what I would want people to hear is you are no lesser because you suffer. Your suffering makes you more and it is worth more. And if you can see the worth in that, you will find your worth and your place because it makes you feel worthless. It makes you feel less and you’re not. That’s what I want them to hear.
Paula Redmond (59:48)
Thank you for listening. If you’ve enjoyed this episode, please support the podcast by sharing it with others, posting about it on social media, or leaving a rating or review. I’d love to connect with you, so do come find me on LinkedIn or at my website, and do check out ACP UK and everything it has to offer. All the links are in the show notes. Thanks again, and until next time, take good care.
