An Interview with Emma Dillon

Interview Blog with Emma Dillon, participant of our Nurses and Allied Healthcare Workers Long COVID Support Group

After participating in our nurses and allied healthcare workers Long COVID support group, Emma Dillon, Mental Health Nurse Lecturer, was keen to write a blog about her experiences of the group and her illness. Her Long COVID symptoms meant that she found writing down her thoughts difficult and so we set up an informal interview with her to make it easier for her to share her experiences.

Listen below, or scroll down for the interview transcript.



Interview by Susannah Basile, Head of Programmes, Doctors in Distress
27th October 2021


SB: So, Emma – Hi. It’s really good to see you. Tell us a little bit about yourself and how you’re doing at the moment.

ED: Hi. My name’s Emma. I’m a mental health nurse by profession but I currently work as a mental health nurse lecturer at the University of Northampton. I’ve worked in mental health nursing since I was 18 which is a long time – I’ve been in it for 32 years and loved every minute of it and really been excited by the profession that I love now teaching to nursing students to share some of that passion. I’ve been physically and emotionally very well all my life, which I feel very lucky about, until I developed Covid in October 2020, which is over a year ago now, which is quite scary really, and then unfortunately developed Long Covid and have been physically and emotionally quite impacted by the whole experience. I’m doing a lot better now. I’ve managed to get back to work with several challenges along the way. I’m very lucky to have a very supportive employer but, you know, I’ve still got a lot of ongoing health challenges and periods of relapse so even a year on, still navigating and learning as a nurse and as a nurse academic how that impacts on my professional and my personal life. So, a lot further forward than I was but not quite where I want to be.

SB: Well, it sounds like you’re doing amazingly given the circumstances but as many people with Long Covid will know, it is a journey and we got to know you through our Long Covid support groups. So maybe you could tell us a little bit about your Covid journey. I know you mentioned you got Covid a year ago – how has your life changed since then?

ED: As I mentioned, up until that point I’ve been extremely lucky in being well all of my life. Like most nurses I worked really, really hard, loved my job and pushed myself as we do in vocational careers. So, I was very well, developed Covid in October and unfortunately also shared it with all my family – my husband, two adult children and both sets of elderly parents. And this was all pre vaccination, so it was pretty unpleasant for all of us. Lots of worrying and guilt because I’m pretty certain it was me who shared it. It was quite a stressful time, and it had a huge impact on myself, much more than I could have ever imagined because I was at the time 49, physically fit, healthy, everything was going ok. Physically it impacted me in a respiratory way – I ended up with Covid pneumonia, I ended up with damage to several organs and some neurological damage as well. I was in bed for about 7 weeks – it’s hard to remember now, it seems like ages ago, and really couldn’t function. In and out of trips to hospital, lots of investigations. From then on, I never really, everyone else around me was making a good recovery even my elderly parents and in laws and I wasn’t for some reason. It just seemed really odd; I just couldn’t seem to stretch forward. The fatigue was huge, the energy, I couldn’t even get up the stairs without breathlessness, I was having lots of immunology problems as well so although I wasn’t going anywhere, we were still all in lockdown at that point, I just seemed to be picking up one thing after another so physically it was very, very difficult. I couldn’t function, I certainly couldn’t go to work. It was really difficult to do anything really, even to self-care was difficult and as a nurse, for me it was a real mind bend because I was usually the one who would care for everybody else and here I was, really dependent particularly on my immediate family. Emotionally that’s kind of hard to get your head around. I think it’s hard for anybody who becomes unwell, but I think when you work in a profession where you generally care for others it was difficult. And that progressed really with periods of moving forward and then becoming poorly again. I had 4 or 5 episodes of shingles, lost a lot of weight. It attacked pretty much everything.

SB: You’ve been through everything…

ED: Every system. But I was very lucky, because obviously we were in the middle of pandemic, but I did have very good care from my GP, from the acute hospital and friends and family – I was luckier than a lot of people. And gradually, it didn’t always seem like you were moving forward, but gradually I was making progress. And then I started to work with a Long Covid Team in my locality which also certainly helped.

SB: It sounds like you’ve had amazing support from various different people in what have must been quite a traumatic time. And I wonder whether as a nurse and knowing about more medical things doesn’t really help. In a way, ignorance is bliss. You did mention guilt and feelings of guilt both for passing it onto other people and not being able to work and not being able to do your job. Is that something you’re still struggling with now or if it isn’t, how did you deal with that because I think that is something a lot of nurses feel.

ED: I totally agree. There was obviously the guilt of transmission because I had actually been super, super careful prior to that. My adult son has an auto-immune condition so he had been shielding and I kind shielded with him because I didn’t need to go anywhere, I was lucky I could work at home, I was a nurse in academia at that time so didn’t need to go in. I was fortunate. So that guilt was hard but also my colleagues at work were extremely busy, we were in the middle of a pandemic, we are a nursing team, so I felt very guilty for them, and I felt guilty at home. My best friend lost her husband on the day that I got Covid, he was only 48, and I was unable to support her in any way really because I didn’t even have the emotional energy. I had a lot of guilt about that as well. And I think as nurses we join the profession because you want to make a difference and that’s the job and it’s difficult to have to depend on other people so I did find that very, very difficult. And I think as a mental health nurse it adds another layer to that because you know all the common sense around feelings of guilt and what you should do and what you would say to somebody else but it’s very hard to apply that to yourself and I did have to seek some professional help for that. I accessed IAPT therapies because I just needed to work through it so I would say it’s a lot better know. I’ve adapted and adjusted and made sense of it but even now some days I struggle to do my job or to do normal things or care for family and friends because I haven’t got the energy. I think now it’s probably frustration, it’s moved to a frustration so yes, I still have those days when it is difficult but it’s not as consuming as it was because I guess its balance – I can do some things. I would strongly suggest to anybody who does feel like that to reach out because obviously we know our physical health and mental health are linked and I think the stress and the guilt probably maintained my poor physical health for a while so it’s really, really important.

SB: It seems like you were really proactive in seeking help which is brilliant, and we’ll talk about our Long Covid groups that you came do with Doctors in Distress Reflective Spaces, but you also mentioned IAPT. So as a healthcare profession, generally, as you’ve mentioned, it’s very hard for nurses and doctors to seek mental health support. What would be your message?

ED: I think we’re very good at encouraging other people to seek help whether that be physical or emotional or both and somehow, we think we’re immune to any of these experiences and then we feel like we should be able to cope and almost cure and manage ourselves which of course is impossible, and we know the logic, but we do it. I would really strongly suggest that you reach out to someone or some kind of, doesn’t always have to be a professional organisation, it can just be having a chat with a friend, or a colleague or your manager or something that I did with the Long Covid support group with yourselves or accessing professional help because it’s only going to keep going around and it is going to impact on your physical health as well. Or, if it is just your emotional health do seek support because we know as a profession, we have a high risk of becoming unwell with our emotional health and risk of, luckily for me things like suicide never came into my mind, but we know for some people that they find it so difficult that we do lose colleagues through that and that’s often very preventable so I would really encourage to take a leap of faith and just reach out because I did feel so much better. And I was very open with people about my experience which was really hard because I’d created this Emma who was a very capable coping person, and I was making myself vulnerable by saying right now I’m not. That wasn’t easy but it was so worth it because people actually were a bit like oh my goodness I didn’t realise because I think as health professionals, we’re very good at putting on a brave face – we’re ok. But it wasn’t ok, and it wasn’t getting any better so I knew for myself and for my family I had to do something because otherwise I was stuck, and I couldn’t this time get myself out of it.

SB: And there’s no shame in getting that help is there, it’s a perfectly normal thing?

ED: No, not at all – and there is stigma, and the worst stigma is within health. I teach on mental health stigma day in day out, but I know it still exists. But the only way we can change that is by being open. There is absolutely no shame in doing it. People really respect you and you encourage other people to come forward so you’re not only helping yourself, you’re probably helping other people.

SB: And also, something we’ve heard quite often is if you open up about your mental health, that’s your career down the drain. That’s not your experience or the case, is it?

ED: Not at all – people have been really, really pleasant and really encouraging and the respect – people have said I really respect you and you see other people saying if you can say that then I feel I can. No, not at all. I’m very well accepted and I think it’s helped other people.

SB: I’m 100% sure it has. So that leads us on very nicely to the groups that you were attended which were run by Doctors in Distress. How did you find out about the groups, what made you think about joining and what encouraged you to take that leap of faith and actually log on for those sessions?

ED: The one positive thing when you spend weeks and weeks in bed and I was desperate to get better and was trying everything – conventional medical interventions, alternative interventions and researching around Long Covid, it cropped up on a twitter feed – to be honest I’d never heard of Doctors in Distress before although I work in the mental health field, so it just caught my eye. And I had been and still am involved with a local Long Covid support group which I’d found really, really useful and it was really odd because I’d been used to facilitating those kinds of groups and here I was as a participant and that was a bit odd but I gained so much from that and talking to other people who were experiencing Long Covid and we really helped each other. And some of us were nurses and teachers within that group, so a lot of vocational people. But when I saw your group pop up – I think, as we’ve said, there’s something unique about doctors, nurses, health professionals where we have this kind of mindset and we see the world very differently and for some reason we don’t ever see ourselves as vulnerable and society perhaps doesn’t either they think, particularly in the pandemic, we were being portrayed as some kind of superheroes but we’re not, we’re just normal people. So, I was really struggling with guilt about my role and my profession, was I going to be able to go back and being a nurse defines me. People say what do you do? Well, I’m a mum and I’m a nurse – they’re my greatest achievements in life and I was thinking am I going to be able to do this? So that’s what engaged me to begin with because I’d already connected with some of the nurses in that group so like most people, I was a bit apprehensive – what was it going to be? Was it going to be therapy? And I understand that but for some people that don’t would probably think, I don’t know – what are the people going to be like? What’s the expectation? But I had nothing to lose. My health at that time was really poor, I had time, lots of time, because I was off work for nearly 7 months and I was desperate. I felt very isolated because nobody in my immediate circle, family friends or colleagues, was in my shoes – I didn’t know anybody personally. So, I came along to the first webinar not really knowing what to expect and Emma Wadey was there. As a mental health nurse, she is our lead for mental health nursing and I find her very inspiring and prior to that I’d been in touch with Emma from a professional point of view and liked her mindset and I like her values and I thought if Emma’s involved with this, it must be alright. And it was. There was a lovely lady whose name, this is the brain fog, has gone now, and it was very, very reassuring and I just felt a sense of connection I suppose so I was in, I was hooked.

SB: Amazing and we loved having you there! It was brilliant to have you there. So, can you just run us through for people who don’t know what to expect, what a group on an average week would look like? If you go into a session, what to expect and what happens?

ED: Yes, so it’s really relaxed and informal. The groups are very small. I think we started with about 6 or 7 and it ended up in the end only being 3 of us for the latter half which some people might find a little bit daunting but actually it was really, really good. We felt we really got to know each other and we’re still in touch. So, you start the session, you come into the virtual room, the facilitator is always there. We had a lovely facilitator Fiona who was very relaxed, very calm and she’d make you feel very welcome to begin with – how are you, how’s your week been? There’s no pressure to talk. It’s very informal – it’s about making it work for you. Everybody else is really encouraging so you just generally start with how your week’s been and what’s been good – focusing on that. Our group just generally flowed. It was fine and Fiona would often come in and be either very reassuring or she’d just perhaps encourage us to really reflect on something we’ve said and maybe how that had made us feel. We were three nurses, three different ages and three different nursing backgrounds, fields of nursing. We couldn’t have been more different. But we were all nurses and we definitely had a commonality about the guilt, the shame, the worry- what if I can’t go back to work? You blame yourself, is it something I’ve done, why am I not getting better and everyone else is? And Fiona would be very good at summarising that and then putting it back to us and saying goodness, this is powerful stuff, no wonder you’re carrying a lot of stuff. We’d just generally chat, support each other and ask questions. There were lots of tips – somebody might have found out something about a treatment or a vitamin or a meditation that was good. We would share resources which was really, really good and it just felt like a really safe place. A couple of times, I maybe cried once because I was having a really difficult week. I left the session feeling lifted because the others could identify that maybe the week before it had been one of them. It’s very informal, it’s very relaxed, it’s very safe it’s confidential, Fiona our facilitator was extremely nice but extremely skilled in containing that. The time just flew. Before we knew it, we were coming to the end of the session. Sometimes myself and some of the others did it in bed because I wasn’t feeling well. You didn’t have to have your camera on. It’s very much about making it work for you. But it really was very supportive. We didn’t want the groups to end – that’s how useful it was and we do still keep in touch, the three of us. So, I think that probably speaks volumes because it worked. And I think it worked particularly because we were all nurses and of a similar mindset and we’re facing similar challenges. And going back to work we all worked in environments that were extremely stressed, and short of staff and the pandemic is still around but when we were trying to go back to work the three of us at different phases, and we’ve all gone forward and back and sideways and there are all those anxieties that are all very relational to being a doctor, a nurse, or a health professional that are perhaps different to going to working from home in an office. The demands are unique. The other Long covid group I did, and still go to occasionally is fine, but this had, for me as a nurse, it had something different and was very helpful.

SB: So, did you feel that actually being able to share with people in a very similar position, profession and understanding – did it help with all those feelings of guilt and shame?

ED: Absolutely. I think with all of my covid recovery I could never pinpoint it was one thing. I think it was a combination of various different things and I do think attending the group is one of the key things (in my recovery). I’d always encouraged people to go and facilitated groups myself, but I’d never really understood the power of them if they work for you because they’re not going to work for everybody. It really was powerful. It’s that commonality. I think for most of us in the health professional it’s so much of our identity. I’d felt like I’d completely lost my identity as a professional and as a person. And it gave me confidence to know I hadn’t suddenly forgotten 30 years of nursing and other people are off with all sorts of reasons and I would not bat an eyelid about that, but here we all were feeling really, really guilty. And I think the nature of covid is that it’s a very different experience for us all. Nobody had been in this situation before because it was a very unique situation. And as much as you can talk to friends who are non-health professionals, they have a different viewpoint understandably. I couldn’t understand somebody who was going back to work in Sainsburys – I couldn’t relate to that because I couldn’t know what it’s like. So, it was really helpful to have that.
SB: And encouraging to have that reminder for self-compassion. You can treat yourself the way you treat other people because it’s very easy not to and be very, very hard on yourself.

ED: It was a big reminder. And also gaining confidence in how to navigate things like going back to work. None of us had been poorly before and our employers were all learning about how do people come back to work with long Covid and 18 months they still haven’t got real answers. I’ve mentioned I’m very luck with my employers, but other people weren’t so lucky, so we spoke about how do you try and engineer those conversations, how do you get across the importance of you’ve got to keep looking after yourself but then you’re going into an environment that’s absolutely full on so we’d help each other and say that really worked, so that’s really important and that’s really unique to health. But to me, that’s what was really helpful.

SB: It sounds like you talked about a bit of everything really. It wasn’t one thing, it’s just what came up.

ED: Yes, we did. Some weeks, to be honest, we perhaps didn’t focus so much on that and one of the ladies moved house in the middle of it all which was stressful, so we talked about that. Another lady had very young children so that was bringing different challenges and the other two of us had older children. Sometimes it was about other stuff which was nice as well.

SB: Great well thank you Emma, it’s been really great chatting and hearing a bit about your experience and how you’ve been and how you are. And thank you for sharing, I know it’s hard to be vulnerable sometimes as we talked about so it’s really appreciated.

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