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Being a doctor and a patient can be a challenge.
Not only do you have to deal with your illness, but you also need to deal with the identity conflicts this can create.
In this episode Dr Paula Redmond talks to GP, coach and writer Dr Claire Davies about her experience as a doctor-patient when she was diagnosed with Lupus. And how it didn’t fit her narrative at all.
You can find Claire at her website www.clairelouisedavies.com or on LinkedIn.
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Transcript
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Paula: Hi, I’m Dr. Paula Redmond a clinical psychologist, and you’re listening to the When Work Hurts podcast. On this show I want to explore the stories behind the statistics of the mental health crisis facing healthcare professionals today and provide hope for a way out through compassion, connection, and creativity.
Join me as I talk to inspiring clinicians and thought leaders in healthcare about their unique insights and learn how we can support ourselves and each other when work hurts.
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Paula: In this week’s episode, I spoke with Dr. Claire Davies, GP and coach about her experiences being a doctor-patient. She talks about the challenges she faced when she received a serious physical health diagnosis and the complexities of being a sick doctor. I started by asking her how it all began.
Claire: I think it was 2008 or 2009. I was in my mid-30s. I was used to having really robust health and I just wasn’t feeling quite right for a number of months, six or eight months. It took me a really long time to go to the doctor, like a typical medic.
Paula: What was going on there? What do you think was getting in the way of you–?
Claire: I think it was a mixture of things. My symptoms were quite odd. Being a medic, I was trying to make sense of them myself, and I couldn’t. Actually, I think most patients will go to the doctor, and we see a lot of symptoms that don’t make sense to us as GPs, but patients just bring them, but because I couldn’t intellectualize them. I actually thought, “How on earth am I going to explain this?” I had these tiny little joint pains, which I knew were not going to fit the criteria for anything. I was intermittently exhausted but also what kept happening to me was a really weird thing.
I just felt so spaced out and I thought I had no way of going in and saying [laughs] these things are happening to me using language that I would use at work. I think I found it really hard to bridge that thing between a doctor and a patient actually at that time, because of the type of symptoms I had.
Paula: What was it then that led you to going to the doctor?
Claire: It was early Christmas, and then the new year, I just crashed with exhaustion, and I did go to my GP. I think I went in there with my own working diagnosis that I must have some infection somewhere. They went along with that. I think that’s a real doctor-patient thing that we colluded with what my idea was, but I did get some bloods done and they weren’t quite right. I did another very doctor thing. I think that– I really catastrophized, couldn’t identify with having abnormal blood results, me.
It’s quite funny just talking about this now, actually, I’m realizing so many things just telling you this story. Then what happened is in one of my workplaces at the time. I had two, we did another very doctor thing. This my colleague, got me in with someone’s clinic [laughs] at the end of that morning, because I was also convinced I had a tropical disease, because I’d traveled so much. I’ve been in some quite crazy places. I’d been about 18 months before I’d been in Mali in the desert. I thought I maybe I’d picked something at lingering from there and tropical diseases were one of my interests.
I’ve given myself a tropical disease. I ended up there, and the doctor was very nice, but he ran all the tropical disease things, but one thing he wondered about was an autoimmune disease, and in my mind, I was absolutely, “No, that is not me. I must have a tropical disease.” I think I was determined to have a tropical disease. I thought I was Kate AD who ended up on the tropical medicine unit once with a rare hemorrhagic fever. That was probably who I wanted to be.
Paula: Is that because there’s something a little bit, I don’t know if this is the right word but glamorous?
Claire: I think so, but also there a lot of them are eminently treatable. I think there was also a hope in to that. I had my bloods done, and a chest x-ray and had a little bit of time off work, and went back for my results. The doctor, he just looked really serious. He said, “It looks like you’ve got lupus,” and I could not believe it at that moment. I actually did not accept it. I went out and I remember sitting in a café near the hospital, and my husband’s not medical, and I was trying to tell him about what this thing is.
I felt like it was a disaster, because all I could think of was all the times I’d seen in hospital patients with lupus, and I’d seen a lot of young women who’d had really severe strokes, and I just thought, “Oh my God, that is what’s going to happen to me.” I was completely devastated because of my medical knowledge. I think some patients would’ve just taken that, so we’ll just have to see what happens, or they might be really anxious. I think my medical experience of that disease just devastated me.
Paula: What was it like, that the interaction with the doctor giving you that diagnosis?
Claire: I think he was trying to be really kind and quite serious. I felt like as soon as we crossed into that diagnosis, I felt like something had changed. I don’t know now if that has come from my projections, because something had changed about me, or if you suddenly have a serious diagnosis that something changes in your colleagues. For me it felt like really crossing over to the other side of something, you’re suddenly not invincible.
Paula: How did that evolve then? You coming to terms with the diagnosis or whether you did or–?
Claire: I didn’t come to terms with the diagnosis for a very, very long time. This isn’t exactly answering your question, but what happened to me is, I got put through quickly to see the really top person and he said, “Yes, that’s the diagnosis.” He said, “You should be better very quickly.” He was very positive about it. He thought and said, “You could feel better in a month or two,” and this was going on, and then my blood test said I was in remission. and it was going on and on. Six or nine months later. I said that there’s something still not right with me.
I realized I had a lot of digestive symptoms, and I pushed for another referral. Actually, luckily we had private health insurance, and this is a whole other story, but eventually, something else was wrong with me, so I had two diagnoses. I had small bowel bacterial overgrowth as well, and that proved really difficult to manage. It took about four or five years to get on top of that. I spent the whole time feeling ill. During that time I hadn’t come to terms with anything.
Paula: Two quite big diagnoses at the same time. How did that impact your identity? Do you think having that?
Claire: It was interesting that for some reason, these two diagnoses did not match my identity. I consider myself quite a plain-speaking, logical person. I’m from Yorkshire, I say what I think. I think I would’ve managed much better if I had a disease that behaved or diseases that behaved more logically and predictably. Lupus is notorious for being unpredictable, and small bowel bacterial overgrowth was really difficult to manage. That was actually the really difficult thing to manage.
I could not match the whole thing that I had unpredictable, difficult to manage diseases. I would’ve expected something linear and logical, hence a tropical disease. I’ve never heard anyone who’s a doctor-patient describe it in that way. That more think may be unique to me, but I definitely had a big identity thing going on there that I’ve had the wrong diseases.
Paula: What was it like working during that time?
Claire: Quite rubbish, really. I think just how tired I was, and there was immense pressure I put on myself to be in work, partly because being back at work meant being myself again. It was like a marker for myself that if I was in work, I would be okay. I think the emotional labor that we do as medicine is very tiring. Very often I would be seeing patients that I really got the impression they were not feeling as bad as I did.
Paula: How about, how things were with your colleagues? Did you let them know?
Claire: Yes, I did say what was going on for me, because I needed the time off. I think I painted a picture that I was doing better than I was. I have a feeling just generally talking with colleagues that people don’t know what to say, still now in this time if I mention it. I think people don’t seem to know how to react to it. It’s funny, I was talking about this with someone this weekend who’d had an operation and recovered.
It seemed absolutely fine to talk to colleagues about it, as if it was something straightforward where people were expected to recover. That was a lot easier to talk about with people.
Paula: Yes, because it’s interesting just thinking about the nature of the diagnosis that you had that– Excuse my ignorance and lack of medical knowledge, but there’s a sense of those illnesses being much more systemic or part of you, really core all through you. Whereas if you’ve got something that, like you said, is a foreign thing, like a tropical disease, that’s something that’s come to reside in you, and can be taken out, that’s clearer, simpler, less entangled up with you as a person. Whereas these kind of illnesses are less discreet from you as a person.
Claire: I think it has to integrate into your whole being, and I will say, absolutely has integrated into my whole being, absolutely. I had a colleague who was very, very, very active, and had had a heart attack with no obvious reason, and he was really helpful. He just said, “You have this thing and it’s difficult.” After a while he said, “It just became part of me.” He had to go through this process. I think it was something that really threatened his identity as well.
He went and did far too much after his heart attack, and blocked off his own stent quite quickly after his heart attack. I completely see why he did that, because he was quite like me, quite an adventurer, but I think because he felt well after he all got sorted out. He integrated with him much quicker. It took him a couple of months, whereas I was just going on with this thing for years.
Paula: How have you managed to come to that place of feeling more integrated with it?
Claire: Well that’s a good question. I think I went through a process of deciding that I had to find the meaning in my own life every day no matter how good or bad I was feeling. I actually found a couple of patients quite helpful with the same diagnosis. Sometimes you can see a patient, and they’re doing really badly and it’s awful, it’s quite traumatizing, but also saw a number of patients who are doing really well, and I was just like, “Claire, these patients are living their lives. [laughs] You’ve got to learn from that.”
I also believe that your own growth comes often from challenge. Actually changing the way I was thinking about the whole thing made a really big difference. Actually once I changed the way I was thinking about the whole thing, a lot of the symptoms got a lot better, and then that made it a lot easier.
Paula: What was it that shifted in your thinking?
Claire: I think that there must have been an acceptance about my identity. There was definitely something where I just started to look for more meaning and enjoyment in every day as a way of changing my thinking. I had to stop reading about it. That had been a problem, and that definitely made a big difference to me. I remember when I was first diagnosed, because I was such an adventurer and traveler, I was really devastated. I was told that going in strong sunlight could trigger a flare up. That was a bit of a– It was a complete nightmare for me.
I remember vowing that I was going to get over this, but it’s a thing about having a battle against your disease. I think for me that was the wrong term to stop battling against the disease, to start live with alongside the issues. I’m really into all this stuff about how positive psychology and everything affects your physical health. For me, that’s been a huge part of it as well. I actually have gone on, and I have lived abroad again since, I’ve lived in Ethiopia since, and I’ve been fine. I have actually done a lot. I have got a lot of places with working on that whole mind, emotion, body connection.
Paula: I really like that point that you made about dropping the battle, dropping the struggle with it and learning to live alongside it, and that being quite key to opening things up for you rather than things being shut down.
Claire: I’m quite proud now of the fact that I’ve got through all of that. I would say that there is something about the medicine you take, seeing the doctor, and all of that kind of thing. I also did a lot of things for myself, probably too much, being a doctor. I do think you can do an awful lot of things to look after yourself and get the best for your health. I really think that’s important as well.
Paula: I guess there’s a sense of– When you talked about that moment of receiving the initial lupus diagnosis, and that sense of having crossed to the other side that it’s a bit like, it’s either or. You’re either a doctor or a patient, and then it’s very difficult to, as you said, integrate those two. I wonder whether at this point you feel– How you relate to that doctor identity, whether you feel that that is still diminished by your physical health diagnoses?
Claire: Not at all. I think the process of being a doctor-patient, initially before we got into bad news territory, I was absolutely fascinated by being on the other side. It was really illuminating. I still learned an awful lot from the experience. I think now it’s just amplifying as a person. You know what it’s like before you go into the doctor, that you’re thinking about what you’re going to say, and what it’s like to be nervous about test results. You know what it’s like to live with persistent symptoms.
I know what it’s like to have struggles with your mental health because of all that. Having that lived experience, I think deepens your empathy and understanding in clinical practice. It’s been really useful. I won’t recommend it. It has been really useful to go through that. I think it’s taught me more about just sitting with a problem. It’s something patients really appreciate to just sit with a problem, and it can take longer than you think it’s going to.
Paula: Yes, I can imagine that must be very valuable to patients, that that sense of being alongside people I guess in the experience rather than– I’m wondering given your journey with this, what wisdom or support you might want to offer your past self?
Claire: Well, one thing I always wish I’d done is that I wish I’d taken a couple of months off sick at the beginning. I always wonder if that would’ve made more of a difference to me. I think generally for doctors, take more time off, and plan for more time off than you think you need.
Paula: What got in the way of you taking that time?
Claire: Oh, that was completely self-imposed. Completely. There are times I think there is pressure from systems to get people back to work far sooner. I have seen that play out. It can be coming from your colleagues. I think with me it was absolutely self-imposed. I’ve also heard of other things where people have been started on medication, and their colleagues are like, “Will you’ll be back to work shortly then?” and they won’t, because things take a long time to work.
Paula: From your own perspective, do you think that was about wanting to be in work, or a fear about what it might mean for you to be taking time off, or what people might think about you taking time off?
Claire: It was all of those things. It’s what people think, just that whole doctor thing of being stuck in the helper mode, and not being able to accept help for yourself. I think I was so strongly identifying with my work that I thought that being in work would make me feel better about everything. It was holding onto an identity thing as well.
Paula: Anything else, any other wisdom that you would’ve wanted to offer yourself?
Claire: I think when you are really stressed about all these things, you have to get some attention for your mind. The more stressed I got about everything, the more is just focused on symptoms. Whatever it is to attend to your mental and emotional health, whether that’s going and talking to someone professionally, or doing things that are self-nurturing. I actually spent an awful lot of time gardening. It was really healing in a way that I can’t really describe, but I always had enough energy to get out and do that.
It can be anything for people, might be knitting or whatever. I think having some support. One thing for me is I just found it really difficult to ask for help, even though I was pushing for appointments, and in somewhere for some help, I’d go in there and think, “I just can’t say what’s wrong with me. I can’t say how bad it is.” Getting some support with that. I have a really supportive husband who started coming along to appointments with me. Partly to remember everything that’s being said actually, you just can’t remember everything doctors are saying to you.
Also as a benchmark like coming out going, was that okay? Was that reasonable, or was that not reasonable? I think a really strong thing for me was finding a doctor or doctors that can cope with doctors of patients. It is an art form. I found an amazing gastroenterologist in the end. He was brilliant because he could cope with the doctor’s side of me, and go at the right level. He could also take charge when it was needed. I don’t think that’s in any manual anywhere how to do that. I have a really good GP who’s used to me.
Paula: Yes.
Claire: Yes. I think finding healthcare staff that are comfortable enough in their own skins to deal with doctors, because not everyone is, or not everyone knows I still wonder when I’ve got doctor patients, or I know that they think that they’ve got this wrong with them, and I’m not sure and am I confident enough in the diagnosis to tell them it’s really not that. It is hard
Paula: Yes. I do a lot of work, therapy work with psychologists, and I find it it’s really challenging, because that imposter syndrome looms very large if you– It’s hard to hold onto your professional authority in those situations. That’s really tricky, because I guess you’re trying to strike a balance between respecting the other person’s professional knowledge and wisdom, but also allowing them to let that go too, or needing to encourage them to let that go sometimes, so that they can be looked after.
Claire: Yes, it’s really difficult. I think one of my bug bears at the time was I looked at some stuff on doctor patients, and the only things that were around at the time were really about mental health and addictions, which is an issue in itself. There was nothing about how hard this was just to be a doctor-patient. I don’t know if there’s anything more now there’s something on a website called the Joyful Doctor about a course about how to be a doctor-patient. It’s run by a psychiatrist called Dr. Caroline Walker.
For anyone listening who’s struggling at this point, that might be something useful to look at. I haven’t done it, because I don’t feel like that’s something I need at this point in time, but it’s certainly some help with how to be, how to ask, how to behave, when to push. There’s a lot of stuff I’ve read about the way to be a doctor-patient is to go in and just be very accepting and handle your trust over to your colleagues. I don’t think it can work like that, because we know that things can go wrong. We know a lot about that.
We are going to be alert to that when we go in, and we come in with a different knowledge level, and that just needs acknowledging, even when we are totally wrong. I think that bit needs to be heard. My gastroenterologist, he had this way with him. He would be quite friendly. That was when you went in, so it’s a bit more like a peer thing. Then he would listen to me, so I’d get listened to and empathize. Then I would probably come up with something I’d read.
He just always had superior knowledge that wasn’t written anywhere that he would then come up with and tell me how it was, while taking into account my views. It was just such a skillful way of gently shutting down the doctor part of me. He did it so nicely. I loved it actually. Just have nothing but praise for him, and my GP is great as well. I make sure I always see the same GP if I can. Yes, it’s a tough line to tread.
Paula: It’s funny, isn’t it? I guess there’s an idea that being a doctor-patient is something that might be quite rare, but I guess as a person living in a human body it’s going to be everyone at some point, and I guess there’s varying degrees of what people might be carrying and going through. It’s funny that we still struggle with that identity dilemmas is still really or conflict really strong.
Claire: It’s interesting when you say there must be a lot of doctor-patients, because there must be, but I don’t know of many, or can think of any who has openly struggling with or managing successfully chronic diseases. This may be going off-track a bit, but just to give you another example, I didn’t feel I could talk about my blood results with any of my colleagues, but my husband has really badly damaged his knee. There’s this spectacular list of things wrong on the MRI. Everyone loves to talk about that and go, “Wow, you really wreck your knee that’s amazing.”
[laughter]
Claire: If I came up and said, “Oh, look at my autoantibodies,” I’m sure that would shut everybody down, but the knee can be fixed, hopefully.[laughs]
Paula: I wonder if there’s something really functional about that identity divide? That in order to do the work that you do, it’s a protective thing to have a sense of them and us in a way. That it’s quite threatening to be confronted with an idea that you’re just as vulnerable as the next person, as a doctor.
Claire: I agree with that. I’ve read things about that, that in order to do the work and witness the amount of suffering and what it is to live and breathe and die as a human, we need to be protective to some point. Trying to do the work while dealing with the other side of it is very difficult. One thing I heard was the doctor that I’d been under for the Lupus did a radio show.
I think these statistics are probably old, but he said about one in seven of his Lupus patients were dead within seven years. I really thought I was in such a state. I really thought, “Well, I’m going to die by the time I’m 45.” I’m 51 now still– Yes, I can laugh now still going. Yes, it’s a huge thing to deal with, and you are often looking a lot of really negative statistics. You don’t see the people that are living well with their issues because they’re out busy living well.
Paula: Claire, where are you at with this now? How are you negotiating those identities now that you’ve talked about it feeling integrated and–?
Claire: I actually just feel totally cool with the whole thing. It’s fine. I’m really proud of having been through it, and I think it has been a huge learning experience. I found that actually, once I’ve been through that for such a long time, I actually grew as a doctor that I was a lot more comfortable to sit with big stuff. When I was quite a junior GP, if someone came in with a really big bereavement, you felt like, “Oh God, what am I going to say?” Now it’s like, “Okay, bring in that.”
That’s just comfortable to sit with that. It made me a lot more settled at taking on big stuff, just in life in general, and about if there are problems and we sometimes just don’t know what’s going to come up that will help you solve or change the course of that problem. More accepting just of uncertainty in life. I feel quite proud of myself of the things I’ve done to negotiate that, and to have had that experience. Now, I wouldn’t change it now. I wouldn’t.
When I was working in the humanitarian sector, I worked with a big group of psychologists and psychotherapists who did assessments of people’s fitness to go and work in war zones and so on. One thing they always looked at was for adverse experience as a marker of people’s growth and strengths and personal development. Until I was 35, I hadn’t really had an adverse experience. I was extraordinarily privileged. Well, I’ve had more than one now, but from a personal point of view, it’s been really useful, but I say that in a position of feeling really good. I feel normal, and I’m grateful every day for waking up and feeling normal.
Paula: I know that one of the new avenues that you’ve been exploring recently is coaching alongside being a GP. What’s that been like for you?
Claire: In a time of great difficulty in medicine in the pandemic, it’s been really, really energizing. I think part of my whole journey realized the power of ourselves, helping people to come up with their own ideas, their own solutions, and see more than there is that’s available to them obviously, at that time. Coaching actually really helped me with my health. One thing a coach did with me in my house, he said, “I’m going to make you write down 100 reasons why you are grateful to have this illness.” It sounded impossible.
I think I got to 98, but I did get a long way with that list. It started to change my thinking about the whole thing. In that coaching, I’ve got the courage to do the things that make you nervous. Then you actually get your successes that way. It’s something that I really want to pass on. I think one of the challenges in medicine is that patients come to us in peril for whatever reason. They bring a lot of negativity, and that is infectious, and we can get into that place really easily. Lifting people out of that place. It’s great. I love it. I really love it.
Paula: I like how you said about it being really energizing. Something that can, I guess, sustain you and nurture you for the other parts of your professional life that might be still really important and meaningful for you, but really difficult and draining at times.
Claire: Yes. It’s useful with patients as well. If it’s the right moment just to help people come up with their own solutions. Actually, one thing that’s been really, really nice is notice things about patients that are positive and affirming of them. Noticing when they’ve tried really, really hard before they’ve come to the doctor, or even note patients that we find challenging trying to think, actually I’ve noticed you’re really persistent here, or you’ve been really resilient and staying with this situation and your family. You can hear that they’re really moved by that.
Paula: It’s a skill that you’ve been able to bring into your GP work too to enhance that?
Claire: Yes, it’s great. Actually, that skill of just listening at a deep level and sometimes asking permission to give advice, because we’re there as doctors to tell people what to do medically, and sometimes people don’t necessarily want to be told what to do. I had quite a powerful moment when a patient was telling me all the things that had gone wrong on their hospital’s admission.
My normal reaction would be to listen to the story and say, “Well, actually that sounds okay. I acknowledge you’re feeling really bad, but it sounds like the medical treatment was okay.” At the end of it, I said, “Would it be helpful if I made a comment on your management during the admission?” She said, “No, I just wanted to talk about it, but really thanks for listening.” It was quite a powerful change.
Paula: Claire, if people want to kind of find out more about your coaching services, and how they might be able to get in touch with you, what are the best ways to do that?
Claire: You can go on my website, www.clairelouisedavies.com. I’m also very active on LinkedIn. You can probably find me here and there on Paula’s feed as well, or claire@clairelouisedavies.com. I mainly coach doctors who are struggling professionally, or looking to kickstart a new side hustle or career or indeed if anyone has a health issue, health issues even, and they’re struggling to be a doctor-patient. I’m very happy just to have an informal chat about the process.
Paula: Thank you for listening. If you enjoyed this episode and you’d like to help support the podcast, please do share it with others, post about it on social media, or leave a rating and review. I’d love to connect with you, so do come and find me on LinkedIn or Twitter. You can also sign up to my mailing list to keep up to date with future episodes, and get useful psychology advice and tips straight to your inbox. All the links are in the show notes. Thanks again. Until next time, take good care.
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