Diabetes Discussions: Mental Wellbeing

Jack [00:00:10]: Welcome to Diabetes Discussions, the brand-new podcast from Diabetes UK.  

[00:00:14] Each episode we’ll be talking to you about the realities of diabetes, sometimes known as the hidden condition. Millions of us live with it. Millions more misunderstand it. We know diabetes can affect everyone differently. It can play a small part in your life or completely consume it.  

[00:00:32] We'll be sharing personal experiences from those impacted every single day, but who don't let it hold them back.  

[00:00:40] I'm Jack Woodfield from Diabetes UK and I'll be guiding us through the conversation and sharing my own stories of living with diabetes.  

[00:00:50]: Today we’ll be talking about mental wellbeing. This is a sensitive subject, and some of the topics covered may be upsetting. If you would like advice and support on this subject, you can search Diabetes UK online, or ring the Diabetes UK Helpline on 0345 123 2399. Our Helpline team can help whether you’re looking for support or just to talk to someone who knows about diabetes and mental wellbeing.  

Kayleigh [00:01:19]: You get so inside your head and it's a constant cycle of self-blame or whatever, and you get those negative thoughts and they just keep going round and round and you’re just spiralling.  

Amrit [00:01:31] Accessing healthcare, mental healthcare within the diabetes pathway is really problematic as well. There's just not enough of it around. 

Jack [00:01:45]: Joining me for this episode, I'm delighted to welcome Kayleigh Steel and Dr. Amrit Sachar. Kayleigh, hi.  

Kayleigh [00:01:51]: Hello.  

Jack [00:01:52]: Kayleigh lives in Stafford and works in HR, in which she's also studying for a Masters. She was diagnosed with type two diabetes the day before her 23rd birthday. And Amrit. Hello.  

Amrit [00:02:02]: Hi.  

Jack [00:02:03] Amrit is a liaison psychiatry consultant at the Imperial College Healthcare NHS Trust and West London NHS Trust. Her clinical work has centred around the mental health aspects of diabetes.  

[00:02:14]: We're talking about mental wellbeing because diabetes doesn't just impact you physically. It's something you have to think about 24/7 day in, day out. And people with diabetes are two to three times more likely to experience mental health problems than the general population. 

[00:02:29]: I think where I'd like to start is diagnosis, which is where so much of what we'll be talking about begins. For me, I was diagnosed with type one diabetes, age four, and I have zero recollection of my diagnosis. But for yourself, Kayleigh, being diagnosed with type two, as a young adult, I imagine your story is much more different to mine. What do you remember about your own moment of diagnosis?  

Kayleigh [00:02:51]: To be honest, it was, um- they'd done the HBA1C when I'd asked for them to check my vitamin D levels. And I had a phone call with the nurse practitioner who said, we think you're diabetic, we're gonna do another blood test. And then, um, lo and behold, they called me in about a week later and just sat me down and said, so you are type two, watch what you eat, um, and off you go. So-  

Jack [00:03:16]: It doesn't sound like an incredible amount of support was offered there. Was there any support offered other than that, and was your mental wellbeing ever part of that conversation?  

Kayleigh [00:03:29]: So support-wise, they did offer me, what they call it, a DESMOND course, but obviously I was also diagnosed in the January of 2020 and we all know what happened in 2020 so I didn't end up physically going to the course. In terms of my mental wellbeing, um, I had been struggling with that since I was about 13, 14, and it was never brought up in the conversation when I was diagnosed with type two, and despite me having a long kind of medical record of it, that was never, never linked in any way. 

Jack [00:04:04]: So is that something that, since your diagnosis, recently is that something that's been addressed? I mean, are you with a healthcare team that can offer you more than you were back then?  

Kayleigh [00:04:14]: To be honest, no. Um, I only go for annual check-ups and it's never been brought up until January where I had, um, a slight wobble, shall we say, in the- in with the diabetic nurse. Never spoke to a GP about my diabetes either, I've never had a GP appointment. 

[00:04:33]: It's always been with the- the nurse and it wasn't until then that we kind of worked out a plan and she referred me to some weight loss services. Um, and I spoke with my surgery’s mental health practitioner. Um, I spoke to them once and haven't had any follow up, and that was in my, my check-up was in January. 

[00:04:55]: Um, I did speak with the local mental health and wellbeing team myself, but um, I'd already gone through some CBT with them last year, again through self-referral. Um, and I didn't see how this- going through the same path would change this time.  

[00:05:17]: Um so, to be honest long story short, no, not really. Uh, there's not- there's not really a, a mental health plan with my diabetes. 

Jack [00:05:27]: It seems a shame that you've had to go through what sounds like an incredible challenge without having some sort of security net from your healthcare team that you feel you can really rely on. Currently, what are some of the biggest challenges for you when it comes to your mental wellbeing?  

Kayleigh [00:05:42]: I think it's mainly like I do struggle with like depression and anxiety. Um, the anxiety, I guess, doesn't really affect the diabetes so much. It's the days where I don't wanna get up in the morning. Um, and I don't want to, um, I'm very conscious obviously, that other people will be listening to this, so I don't wanna say anything that triggers anybody. But, um, on the days where I don't want to carry on, um, so to speak, um, it's those days where I will just eat whatever I want. 

[00:06:15]: Um, or, you know, do things that aren't ideal. Um, and obviously the higher my blood sugar is, the the more tired I am. And then it's- it starts a kind of vicious cycle cause the more tired you are, the more kind of junk food you want. It's kind of a spiral and if you're not looking after yourself, it can have a lot more detrimental effects, I think. 

[00:06:36]: Um, so yeah, it's- it's mainly on- on the bad days where I'm not eating the way I should, that it can really affect.  

Jack [00:06:44]: I'm so sorry you've been going through this and thank you for speaking to us about it. I can talk to that a bit as well about the day-to-day grind. Some days are much worse than others, and some days, you know, you feel relatively okay, you just get by day-to-day. But there were some days where, if your blood sugars are high, like you said, it can really change your mood and similarly, if your blood sugar goes low, your mood can completely turn the other way too. 

[00:07:08]: Amrit, does Kayleigh’s experience with struggling to access support through healthcare services and, this not being as beneficial as perhaps it could be, does that sound familiar to you in conversations that you've had with other people living with diabetes?  

Amrit [00:07:20]: Sadly, it sounds really familiar. Um…just going back to the first part of your story, Kayleigh, I'm so sorry that you had all these experiences. Time and time again I've been told by people that the diagnosis is incredibly shocking and, um, I actually think we should be thinking about it in healthcare in the same way as we think about terminal diagnosis.  

[00:07:48]: There's an approach that we use and teach healthcare professionals about breaking bad news, and I think we should take that kind of approach, which is a much kinder way of doing it, and should always come with offering hope. 

[00:08:02]: Um, so with people that I've spoken to, they've told me it's taken a year to two years to come to terms with the diagnosis cause it is life changing. So, I think that's massive and I'm so sad that what you experienced, Kayleigh, was just off you go and get on with it. So yeah, that's one thing.  

[00:08:21]: And there was so much in- in what Kayleigh said that I- I don’t know where to start or finish. Um, accessing healthcare, mental healthcare within the diabetes pathway is really problematic as well. There's just not enough of it around. 

[00:08:37]: I think that, exactly as Kayleigh said, the coexistence of depression or anxiety or any other number of mental health problems make it so much harder to look after the diabetes, which feels like it's a full-time job on top of what else, whatever else you want to be doing.  

[00:08:57]: And a lot of mental illnesses take away your motivation or your ability to do those things like look after yourself and so, um, people quite often move to what we might call self-soothing behaviours, like the eating the stuff that you wouldn't want to eat.  

[00:09:16]: Um, yeah, so all of those things sound really, really familiar.  

Jack [00:09:20]: One thing I think you mentioned about, um, the positivity in regard to healthcare services, is quite important and for people with diabetes to feel confident that when they approach their healthcare team to talk about their mental wellbeing, there will be this positive action plan.  

[00:09:34]: And the one thing I'd quite like for people to-, listening to this, to think is that they could feel confident to do this, but also that they're aware of themselves that they need someone to talk to. 

[00:09:44]: So what would be some of the red flags for someone that is struggling where they would really benefit from taking a step and, and talking to their healthcare team?  

Amrit [00:09:53]: So I think that, um, like Kayleigh, I don't want to trigger anyone and so if you're out there and you're really, really struggling, then we're gonna be able to sign-post people to crisis support. Um, there's no need to be alone, so if you are feeling desperate, please reach out.  

Jack [00:10:13]: That’s absolutely right, there will be links in the episode notes to organisations such as Mind and the Samaritans. Sorry Amrit, please continue.  

Amrit [00:10:20]: So, um, I guess the next thing I would say is that, people respond differently. So the thing that I would really look out for if it's in you or in other people, like your loved ones, um, look out for a change, a change in behaviour, or a change in appearances. Um, and so some of the things that you can really notice is that the person starting to have difficulty, um, functioning, whether that's in their job or day-to-day, or- a real red flag for me would be is if they're a parent and they're not able to, um, look after their children in the way they would normally. 

[00:10:57]: That describes that they're becoming disabled by the condition. And the other thing that, um, Kayleigh touched on earlier is when people start using coping strategies that they wouldn't necessarily consider to be useful, but they help to dampen down the psychological distress. So that's- whether that's using drugs or alcohol or um, comfort eating or sometimes even restrictive eating. 

[00:11:23]: Um, shopping and gambling or over-exercising or overworking all of those things…or sleeping too much. It's a way of kind of turning away from your distress. So those are things I'd be worried about as well.  

[00:11:36]: In terms of the things that I really worry about as a clinician is when people lose hope. When they can't see a future, um, and life doesn't feel like it's worth living. Then those are the things that make me think, okay, this person really needs some significant measures to be put in place to support them.  

Jack [00:11:54]: It's really interesting to hear- hear you say that and, especially when people have bad days, I imagine those coping strategies become much more prominent. Kayleigh, where do you turn when you feel like you really need support and- and what's, what's helped you personally? 

Kayleigh [00:12:09]: To be honest, I've been working this out for the last like, what, 12 years. So, um, so I’m getting pretty good. Obviously, I've got a good support base in terms of my family and my partner, um, he's- he's really good. Um, if it does get too much then I can like contact the GP. Um, but obviously I'm not- I'm very aware that there's a lot of people that also need help and there is like obviously long waiting lists and things like that. 

[00:12:35]: In terms of diabetes help as well I- I contact the Diabetes UK Helpline over emails. That's always quite helpful. Um, so I just kind of muddle through, um, as best I can. But I do know there's the, um, local health and wellbeing team that you can self-refer to. 

[00:12:54]: But like I said, I- I've spoke to them recently and it's a three-month waiting list before your first appointment anyway, so- which I'm sure was the story from across the whole of the UK unfortunately. 

Jack [00:13:04]: It certainly doesn't help, the backlog across the NHS, for providing support for this. One thing I'd- I'd quite like to talk to you both about perhaps is the stigma of talking about our mental health. I mean, Kayleigh, you are just so incredibly brave talking about this, but I do wonder if there's people listening to this that think there was still a stigma of talking about your mental health and opening up and just, you know, taking those steps.  

[00:13:30]: And I wonder, Amrit, is that something that you've seen, um, for people that you've spoken to that, you know, if they are showing perhaps some signs of struggling, that they just think, well, no, I don't need to do that. I'm fine. I don't want to go down that road. Is that something that you've seen?  

Amrit [00:13:46]: So, I suppose being a psychiatrist, I'm seeing people, usually, who've overcome that hurdle because they've reached out to me unless they're there against their will. Um, but I do come across it when I speak to people kind of in the community, and I'm really struck by just people that I know who very much still talk about depression and anxiety being something that happens to other people. 

[00:14:17]: And… so people talk about weakness of character and strength of character, and they- those seem to be synonymous with mental illness or not mental illness. We talk about kind of, um, other communities in-in the UK we're a multicultural, um, country and we talk about different communities who perhaps don't have a word for depression or um, don't talk about depression, but actually the English are well known for the stiff upper lip, et cetera and so there's quite a lot of that kind of putting the brave face on and just carrying on and… 

[00:14:53]: It just strikes me that it takes so much energy to put that face on and that could be energy that you could be putting into getting better rather than putting a brave face on for the rest of the world and it feels so desperately, um, sad to watch people wasting their energy on that. 

[00:15:12]: I supposed I'll use this moment to disclose that I suffer with, uh, recurrent depression and it was really difficult for me to come out and own that as a mental health professional, but kind of feel that actually, if I can't own up to it, then I can't expect other people to.  

[00:15:32]: I guess the other thing about, um, stigma and mental illness is that it's something that you can't see. So if somebody breaks a leg or, you know, has a heart attack, those are all things that you can see, they're visible, they show up on x-rays and other tests. And so mental illness is much more likely to be considered as kind of all in your head, being making it up or not real.  

[00:15:55]: But I think the fact that we can't see it also allows us to bury it and stigmatize it.  

Jack [00:16:00]: Firstly, Amrit, thank you for your honesty in sharing your own mental health struggles. When you were saying that, I was thinking about when you can't see it, how your friends and family might not know unless you have that close bond. And having that close bond is important, but for some they might not have that.  

[00:16:29]: Kayleigh, you said that you were really close with your family and friends and you have that support network in place, is this something that you feel comfortable, you can confide in them? Are they aware of, you know, the problems that you've had since your diagnosis? 

Kayleigh [00:16:32]: Yeah, they-they are, they all, um, I can talk to them, um, but I’m, also quite stubborn and apparently I take after my father in that I don't like talking about it [laughs]. So, um…yeah, it's, it is a struggle cause I'm quite independent as well as being very close- I'm like a paradox. But um- [laughs] in terms of like when you- when you were talking about stigma, um, for me it's not necessarily the stigma of mental health as such. 

[00:16:59]: I think that, particularly my age group is pretty au fait with the- the mental health struggles that everyone has. Um, but it's the stigma of the diabetes that I struggle with and then that negatively impacts my mental health as well. And I've spoke about it a lot with, um, particularly my- my mum and my partner, um, because…The image that people have of diabetes and particularly type two, but I know that type one sometimes gets lumbered with this as well, which isn't the case, but, um, a lot of people think it’s your fault if you’ve got diabetes because I’ve had questions like, did you eat a lot of cake? 

[00:17:41]: Um, or, you know, like you haven't looked after yourself properly, or, um, things like that. I've had a- a hell of a lot of healthcare professionals tell me that I'm very young for having type two. Um, so all of these things like, and then when you already feel pretty- pretty down about it and you've put a lot of self-blame on yourself for ruining your life so young, um, in inverted commas, [laughs] um… 

[00:18:09] That when someone else, like a healthcare professional says that to you it is- it is really hard to hear. Um, and like, I think that that's a big thing in terms of stigma and I- I have like spoke to my family about it and, but there's only so much they can say, that they can only say it's not your fault so many times, like, you know, if that's what's in my head, that's what's in my head.  

[00:18:35]: And that is the general stigma of diabetes. Um, that it's your own fault and it's because you're too overweight or you've had too much sugar or pasta or whatever.  

Jack [00:18:47]: It sounds like you've been- I mean I'm sure it doesn't feel to you like you have been strong, but the strength that you are showing, just- just telling the story is, is really inspiring to me. 

[00:18:57]: It takes me back to my childhood a little bit when I was diagnosed with type one and I had a similar reaction from classmates just, you know, oh, you can't eat sugar, or you ate too much sugar and now you can't and those are the things that you know, you know that that's not the case, but they can become quite embedded in you that that's what people perceive you as. 

[00:19:17]: And it takes a lot of self-confidence, I think, to accept that sometimes that is the case, but you know, you- you can rise above it. And I think you've been brilliant with that.  

[00:19:27]: Um, Kayleigh, before your type two diagnosis, you were diagnosed with pre-diabetes age 19. You've spoken about how communication with your healthcare team hasn't always been great with regards to your mental health, but was prevention ever discussed or a recommended action plan to lower your risk of type two? 

Kayleigh [00:19:45]: The conversation I had when I was told I was pre-diabetic was shoehorned into a different appointment. Uh, we hadn't, we didn't have a set appointment for her to say that I was pre-diabetic. Uh, the doctor just said, by the way, you are pre-diabetic. So, um, it would help if you lost some weight and, um, started exercising. 

[00:20:05]: And this is a doctor that I had that knew about my mental health without having to look at my records. It was the first doctor I went to actually when I- when I was really struggling age 14. And, I think if she'd- well… I'm not, you know, I'm not- I don't wish to assign blame to anyone. 

[00:20:23]: Um, but I think if it could be introduced that a link between, if someone's got a mental health record or if someone, even if they don't, if she'd maybe flagged that my weight had increased dramatically, within a short space of time, and she knew the mental health side of it as well, like, if they'd spoke to me about if there's any reason- so for example, 19, I was, um, I'd replaced a, another unhealthy coping mechanism with binge eating.  

[00:20:52]: Um, so if maybe at- the unhealthy relationship that I had with food had been sorted out, I might have been able to push back the diagnosis of diabetes or maybe like prevent it for- for a certain amount of time. Um, just, uh, that forethought of maybe instead of just saying, you need to go lose some weight, which I was already well aware that I needed to do, but in my head, I despised myself, so why would I go and lose weight? Or like, I just- I couldn't even drag myself out of bed sometimes so exercise was the last thing on my mind. 

[00:21:24]: But maybe if the mental health support had come in, then it could have been a different story. Um, here we are.  

Jack [00:21:31]: It sounds like a really pivotal conversation that you didn't get to have, which is really unfortunate. Amrit, just picking up on Kayleigh's story about prevention there, how important is that when it comes to those early conversations? 

Amrit [00:21:45]: I mean, it's important for the health service and for the health of our nation. And, um, we have to go upstream and start picking up problems at the beginning, um, and prevent them from happening. And I was lucky enough to be part of, um, a national diabetes mental health working group, which Diabetes UK convened before the pandemic actually. 

[00:22:97]: And we've just released our recommendations and one of them is that every single person, with diabetes and pre-diabetes, has mental health screening for depression, anxiety, and diabetes distress at the point of, um, diagnosis and then at least annually, but in addition, at every point that their condition worsens or changes as a way of keeping tabs on how they're doing, and just simply having the screening is an excuse to start the conversation with people with diabetes.  

[00:22:40]: And it also signals to people with diabetes that we want to hear about it. Um, we're a long way from getting that implemented nationally, but if you’re, um, a healthcare professional out there, please think about doing it. 

[00:22:55]: And if you are, um, a person with diabetes, please know that that is what the recommendation is. And, you know, if you feel strong enough then you should be, um, asking, demanding it.  

Jack [00:23:06]: One thing I'd like to ask you both, Kayleigh from a personal point of view but Amrit from the professional side as well, is what one piece of advice would you offer to anyone listening to this who might be struggling with their mental health? And Kayleigh, if you want to go first. 

Kayleigh [00:23:21]: I would advise them to, um, if they don't have a support network like family, friends or work colleagues, et cetera, um, someone that they can turn to, I would definitely advise them to, um, seek the help of their GP and I know I've not painted the best picture of my experience with the- the GPs, but, um, I do think that the best thing to do is talk about it cause you get so inside your head and it's a constant cycle of self-blame or whatever, and you- you get those negative thoughts and they just keep going round and round and you’re just spiralling down. 

[00:23:56]: Um, if you, I think getting them off your chest, the first time I spoke about it, like I cried for about two hours, but it just- it felt mostly like such a, such a relief that someone else knew what was going on. So, I-I, I do think you really do have to speak to someone. Um, and I know- I know it's hard [laughs] trust me. I- I know that the last thing you wanna do is tell anyone, um, especially if you feel like your mental health or your- your diabetes diagnosis, especially on- on my part, I can, I feel like a failure sometimes because I've let it get to me.  

[00:24:30]: But, you know, I-I guarantee no one listening is a failure. It's just in your head, and please talk to someone. Get that off your chest and you'll feel much better for it.  

Jack [00:24:41]: You're absolutely not a failure. You are incredible. Absolutely incredible. Amrit, is there anything that you'd add to that?  

Amrit [00:24:48]: Yeah, so I think that's absolutely correct. Um, and I-I guess the thing- just to, um, follow on from what Kayleigh's just said, and I know we're talking about much wider issues, but depression certainly, I always describe it as the opposite of rose-tinted glasses. 

[00:25:07]: So, um, we know that one of the things it does is it changes your view of yourself and of your world and of how other people think of you. So, often what you might be feeling, um, is not reality, as Kayleigh said it-it's, it's the depression playing tricks on you, so please don't let it.  

[00:25:29]: In addition to reaching out, which is so important, one of the things that I would say can be really useful is to perhaps just write a list of the things that are worrying you or burdening you, um, in two columns so things that you have control over and things that you don't have control over.  

[00:25:48]: And now some of those things that you don't have control over may be horrendous things like housing or food or fuel, poverty, or, you know, things that are really awful, in which case, please, please, please reach out for help. 

[00:26:01]: Um, but some of those things may be just things that are playing on your mind about, I don't know, how people have reacted to you, or something like that. And it can be really liberating to list the things that you don't have any control over, and therefore there's no point in worrying about them. And list the things that you do have control over and focus your energies and efforts on those things. 

Jack [00:26:23]: Amrit and Kayleigh, thank you so much for being our guests on this episode, and thank you for being so open with your own stories and experiences. 

[00:26:37]: That's all for this episode of Diabetes Discussions. We hope the conversation has helped you with your own experiences of living with or supporting someone with diabetes.  

[00:26:47]: For more advice and support, search Diabetes UK online. Our website has lots of information on things like how diabetes can affect your emotions, and on eating disorders and depression. You can also join our online forum and chat to a community of people impacted by diabetes every single day. You’ll find more information about this, as well as links to other organisations, that might be able to support you in the episode notes. 

[00:27:13]: Don't forget to hit subscribe, so you never miss an episode. And if you like what you've heard, please rate and review to help others discover the podcast.  

[00:27:20]: Thanks for listening and see you next time.