Diabetes Discussions: Stigma

Jack [00:00:10]: Welcome to Diabetes Discussions, the brand-new podcast from Diabetes UK. Each episode, we'll be talking to you about the realities of diabetes, sometimes known as the hidden condition. 

[00:00:22]: 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.

[00:00:33]: 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. Today, we'll be talking about stigma. 

Nicki [00:00:52]: At times it's really, really upset me. There is this misconception that you must have had an unhealthy lifestyle. You must have brought this on yourself. 

Jim [00:01:00]: I remember being so upset and all these things slowly making me realize that, you know, I was so different.

[00:01:11]: Diabetes stigma can be defined as negative attitudes, beliefs, or behaviour directed at someone because of their diabetes. And it can have a significant emotional impact. We have seen stigma perpetuated by the media. And we've heard from people who have felt stigmatised by healthcare professionals and other people living with diabetes.

[00:01:28]: Joining me on this episode to discuss diabetes stigma are Jim Crossland and Nicki Hornby. Jim is 24 and lives in London. He was diagnosed with type 1 diabetes age 2. He works in business development for a drinks company and is a passionate runner and footballer. 

[00:01:42]: And Nicki is 55 and lives in Somerset. She was diagnosed with type 2 diabetes age 46. She's previously worked in primary education. Jim, Nicki, hello. 

Nicki [00:01:52]: Hello. 

Jim [00:01:52]: Hi.
 
Jack [00:01:53]: A really warm welcome to you both and thank you both so much for being here. So, all types of diabetes are driven by a complex mix of genetic and environmental factors, many of which we don't yet fully understand and many which we may have little to no control.

[00:02:07]: Not only can a diagnosis of any type of diabetes be confusing, but on top of that, we then learn about the day-to-day impact it can have. So, Jim, like me, you were diagnosed with type 1 diabetes as a child. Could you talk us through what that was like for you growing up? 

Jim [00:02:22]: Yeah, no, of course. Um, so yeah, I was diagnosed, you know, age two. So, I guess, and I always say this, I've never known life without diabetes. So, it's a kind of crazy thing where it is a part of my life. I'm still so aware that it's a part of my life. 

[00:02:38]: And even though I've had it for so long, I so understand, even though I have always had it, I know and I can imagine what it would be like not to have it, if that makes sense.

[00:02:49]: Um, and I think that's because, of course, you're constantly surrounded by people, you know, who essentially don't. And there's been lots of different stages of that. So, you know, when I was growing up, um, I think it came in a lot of different waves where, you know, some days it would be fine and I wouldn't really think about it.

[00:03:06]: And then there'd be some harrowing kind of full on moments where, you know, I'd almost sort of break down and really question, like sort of myself and why me? Why have I got this bizarre thing that makes me so different and makes me actually really stand out in a negative way. So, I suppose in that sense, it was a challenge and I am someone who wants to fit in.

[00:03:28]: I'm someone who loves doing all the things that typical sort of, you know, young people want to do. I was obsessed with sports, obsessed with seeing my friends, but diabetes kind of, like, grabbed me by my legs and didn't quite let me do that. And I felt like I was always just being slightly pulled down. Um, and no matter how much I tried, no matter how much I almost maybe overcompensated at times, it was still dragging me down.

[00:03:55]: And the more I would try and fight that, the more things would go wrong. There'd be more issues because when you try and, you know shrug diabetes off, it hits you in the face way harder. Um, I was lucky that I, you know, had the most incredible support system from my family. My mum was obviously just, you know, she was beyond amazing.

[00:04:16]: She would come into school, check my blood sugars, but also appreciate that I didn't want this to be my whole life, and I think that's a very difficult sort of thing for someone who's caring for you when you're like, you know, four years old and don't really have much control over like what a hypo is, which could be seriously dangerous, but also trying to like, let you just completely mould in.

[00:04:40]: So, in that sense, it was really tricky and, you know, I went through so many different parts. I just remember like one birthday party I was at and I had this mini breakdown and I remember it where I was at my friend's cinema party and everyone got given different sort of mini party bags and it was this exciting moment where there was like a sugary drink, sweets, popcorn, and then for some reason I didn't get one and I was waiting and then the person just gave me one with like a cut up apple, carrots and water and everyone bursting out laughing.

[00:05:11]: Of course, I was so young at the time, but little things like that I think just slowly nibbled at you and I started to realize what I actually had and maybe little moments like that, I realized that life wasn't going to be maybe as straightforward.

Jack [00:05:27]: That birthday story is very sobering, and I imagine that was character building in a way that at the time you would not have wanted it to have been. But I think it's really personal to me, something you said earlier about it as well, be it some days you can't shrug it off, some days it can be right at the back of your mind, and then some days it's just- it's there and it's a real issue.

[00:05:43]: So, Nikki, in contrast to Jim and myself, you were diagnosed with type 2 diabetes in your 40s. Could you tell us what that was like for you and what was it like to adapt to living with diabetes? 

Nicki [00:05:54]: So obviously having had 47 years of not having diabetes and not living with diabetes, it was a massive shock. Um, it wasn't even something that was speculated. I wasn't feeling very well. Nothing particular, just really under the weather and thought no, I need to go and get this sorted. 

[00:06:10]: Had a blood test, made an appointment for a week later, the surgery rang me the next day and said you need to come in and I just thought, oh yeah, it'll be menopause or something like that, I'll go next week.

[00:06:20]: Went next week, sat down and the doctor said to me, this says you're diabetic but that can't be right so I'm going to repeat the blood test. And I just remember sitting there and crying and crying and crying, thinking, why? Why me? Where has this come from? There's no history of it. It wasn't expected. It hadn't even been bandied about as a maybe.

[00:06:41]: Took the rest of the day off work, was just in shock I think, real shock, real disbelief. A week later had another blood test, the results were obviously higher by then as well, so I was immediately put onto medication. And that kind of began this really angry few years of trying to adjust, trying to get my head around it.

[00:07:01]: The resentment of, why me? That was the big thing, even when I did the kind of education courses and I remember doing one of those and everybody went around the room and said why they thought they might have developed diabetes. Um, and it got to me and I just sort of said, well, I don't really know. And she wrote ‘bad luck’ on the board, which at the time was really hurtful.

[00:07:22]: But I've sort of since come to understand that actually that can be what it is. It's just bad luck and it can happen to anybody, and people need to understand that as well. And I think that was the really hard thing was getting people to understand that it can just come out of nowhere because it was almost like people- oh my goodness, you're diabetic. Why? And I didn't have that reason so that was really, really difficult to come to terms with.

[00:07:42]: Um, and it's really only the last few years that I've become comfortable with that diagnosis and stopped being quite so angry at the world.
 
Jack [00:07:49]: Yeah, the diagnosis can be so hard for anyone, no matter what age. And like you said, because we don't know, like, the huge, you know, spectrum of causes, it can be really hard to explain and to really understand ourselves as to why it's happened.

[00:08:02]: So, there are several myths and misconceptions about diabetes, such as people with diabetes can't eat sugar, or if you have diabetes, it's because you ate too much sugar. And just a stat I thought I’d share with you both so, here at Diabetes UK, we’ve been investigating the stigma experienced by people living with or at risk of diabetes over the last eighteen months. And we found that almost half, around 48% of people living with diabetes that we surveyed, said that they had personally experienced the misconception that diabetes is caused by eating too much sugar which is incredible really. 

[00:08:34]: It’s-it’s unbelievably high and it really shows the amount of, hopefully, change that is required and that will happen within diabetes education and hopefully this time in five, ten years that percentage will be right down.

[00:08:51]: So, Jim, I'll ask this to you first. Have you faced any examples of misguided views about diabetes and who from?
 
Jim [00:08:58]: Yeah, I mean it's such a good point and quickly on that I find that such a common thing I hear, and it does still annoy me even though I shouldn't be annoyed because I think it's no one's fault, there's just a mis-education around it.

[00:09:12]: When people are like, oh that's the thing where you just can't, you know, you can't eat any sugar, right? Or, oh that's just the thing where you- you get to eat loads of cake and I'm like, I don't want to, obviously, at all react to that because it's not meant to be harsh. It's not meant to be like a-a prod, it’s just a misinformation.

[00:09:29]: And I think when you're simplifying something so complex, as to diabetes, it really gets under your skin because, you know, it is obviously so much more than that. It cannot be defined into one thing like that. And I think that kind of brings me on to like those misguided views. And, you know, I- I think I had a lot from, and it wasn't necessarily anyone's fault from sort of when I was growing up, like sports teachers.

[00:09:54]: And when I played so much sports, I think it was obviously my mum saying, you know, you've got to really watch Jim here. You know, we don't want him to have a hypo. This needs to be really monitored and sort of teachers coming up to me and going, do you know what? Actually, you're not going to be running. I'm really sorry. You're going to sit out and me sitting on the sideline, watching everyone run and just being completely confused. 

[00:10:18]: And I just think that I remember being so upset and all these things slowly making me realize that, you know, I was so different and I think it wasn't necessarily misguided, but it's certainly trying to be so safe to the point where you're not letting this child really mix in and you're basically bringing out that stigma more because now, you know, I can't do the things that other kids would do.

[00:10:43]: So, I think that was one. And I also remember, you know, when I first meet people and when I first tell them, I'm so- I'm so much better now, but as you know, when I went to university and even when I met new people at school and different walks of life, I just wouldn't want to tell people and I would hide it.

[00:11:02]: And I remember it was weird. I didn't tell any of my best friends at university for- for three months. So, for three months, they just- my best friends didn't know. And I was just hiding it, like literally living a double life and- I think, though, in a way, my point being that the misguided view really comes from me and from my own personal, like, hang up about it.

[00:11:23]: But I don't want to tell people and I'm hiding it and I'm really living this, like, almost lie where I'm putting myself into dangerous situations, drinking and going out, but not telling any of my friends because I'm so scared that they'll think differently of me. And therefore, that misguided view, really, I think comes from myself that eventually when I told them, of course, no one cares.

[00:11:46]: In fact, they only cared that I waited so long to tell them that's where the-the weirdness comes in. But actually, you know, I think so many of my misguided views perhaps came from me as a child and growing up and-and being told that things were different, so I think that’s where it came from.

[00:12:03]: I think it's a really important point you made as well, that there can be malicious stigma, but there can be stigma just from misguided views and people not knowing enough about diabetes to have conversations with you and to understand what you're telling them. 

[00:12:16]: And Nikki, I'm going to ask you the same question in a sec, but we can face instances where people aren't quite as sensitive as perhaps or as informed as they could be and I find this every time I still go to the dentist, as an example, who without fail asked me things like, now you're not having too much sugar are you? 

[00:12:32]: And I was like, well, no, but sometimes I need to, if I'm having a hypo, you know, which is low blood sugar, and it's explaining these things. And in the past, I've probably chosen to laugh things off a bit more to avoid seeming confrontational and nowadays I try to, educate people or correct people where I can, but of course there's absolutely no right or wrong approach. 

[00:12:51]: So, this is completely down to personal preference when we're faced with a difficult situation. So, Nicki, what misguided views have you faced and how do you react to them when you face them from people that you potentially don't know as well?

[00:13:04]: So, I've even had sort of judgments from healthcare professionals. Uh, I remember being asked by a practice nurse who noticed on my notes that I was type 2 diabetic, that wasn't what I was there for, and she looked at me and she said, oh, you've, uh, you've lost a lot of weight then. And I sort of went, well, I've lost a couple of pounds in the last couple of months, but I didn't really understand what she was asking me.

[00:13:22]: And she said, no, no, a considerable amount. And I went, well, no, um, and that's from a healthcare professional so that was really hard to take. Um, answering people who maybe don't have a kind of really firm grasp on what being diabetic is like, it depends what mood I'm in. So sometimes I'm really willing to sit down and go, well, actually, no, I can eat whatever I like, as long as it's in moderation, but I do have to be careful and I do have to monitor my blood sugars.

[00:13:49]: And people are usually quite receptive to that because it's things that they didn't know and they find it quite interesting. Um, and it was interesting what Jim said about almost being ashamed and hiding it. And yet when you do come out and say it, people are like, oh, I genuinely didn't know that because they only see what they see in the press.

[00:14:07]: Other days I'll just sort of brush it off and they'll say, oh, so can you have that piece of cake? And I'll just go, yep and shove it in. [Laughs]. It really depends on what sort of mood I'm in. Um, and- and what I really think their interest levels are. I have had people who've asked the question, but then you can see them sort of glaze over.

[00:14:24]: That's like, I don't really- it doesn't really apply to me. I don't really want to know. So, it's a very much individual situation, I think. 

[00:14:32]: Absolutely and how much would you say of an emotional toll have you found that diabetes stigma in particular has taken on you? 

Nicki [00:14:41]: At times it's really, really upset me. Being judged, I think particularly for type 2, you are judged and there is this misconception that you must have had an unhealthy lifestyle, you must have brought this on yourself and I don't imagine that there is many type 2, if any, who have set off with the idea of giving themselves diabetes.

[00:15:01]: It's just- it's not something that you- you would wish upon yourself. And it's really hurtful to think that people assume that of you. And it does make you want to go away and, and not sort of not address it myself as well. I've done that before where I'm not taking any more tablets. I'm just going to get on with my life and it will be what it will be.

[00:15:19]: Um, I'm going to live the normal life that I had before. I wasn't. excessive at anything, uh, had a healthy lifestyle, didn't drink to excess, didn't eat to excess, all those things that people assume that you've done. So that does make you feel like going off and going, actually, you know what, I'm- I'm just not going to deal with- with the living with diabetes anymore.

[00:15:37]: I'm going to- I'm going to just live my life. So, it is a constant battle and it does come in waves. And some days I'm absolutely fine with it. And other days I really don't want to deal with it. But you know, you can't just walk away from something like that and pretend it's not happening. 

[00:15:53]: Yeah, I can definitely relate to that too. It is a constant battle and you do tend to pick those battles when you have the option to. And Jim, what about you? You've already spoken about some of the challenges emotionally that type 1 diabetes gave you as a child, how much of a toll overall has it taken on you? 

[00:16:09]: Because you seem like you're in quite a good place in regards to, you feel like you can talk about it a bit more now than you used to, but is there still some real challenges that have come from those experiences of stigma?

[00:16:22]: Yeah, I mean, absolutely, massively. I mean- and actually, Nicki, it's such a good point on what you were going back to on your mood and, you know, so many of my friends- like just the other day I was at this party and one of my friends was like, um, you know my friend's sister's got diabetes. Do you mind talking?

[00:16:37]: And suddenly, you know, I was just being chastised and I felt like I wasn't giving enough because at that point my headspace- my blood sugars were really high. I hadn't slept that night. I was not monitoring my bloods well at all that weekend. And I was just like, you know what, I'm finding this a bit much.

[00:16:51]: And I walked away from that feeling really guilty because normally I love giving people that sort of, you know, that time and that energy, but I could not do it that weekend and I felt so bad. And, you know, I've been going back to that. It comes in waves. And yeah, I think nowadays it's so many different things.

[00:17:10]: You know, I even get sort of self-conscious about sometimes my parents and I actually don't even really like the look of my Freestyle Libre on when I'm playing like football and I'm running around the park. I get really insecure about that. I get insecure about the lumps on my legs and my bruises. I think they look really unattractive and horrible.

[00:17:30]: And I get all this and then I suddenly look at my lumps and I think, am I going to lose, you know, my feet and all this and it really honestly, the amount of headspace and the amount of energy that takes up apart from the fact that you're dealing with the actual disease itself, which is obviously the most tiring thing ever.

[00:17:48]: And as we know, it's like a 24-hour job. And then you've also got these other things where you're self-conscious and of course, it's so dependent-and I think Nicki, that's such a good point, it's so dependent on your head space. And normally it's to do with my blood sugars. 

[00:18:04]: When my blood sugars are really good, um, you know, it almost annoys me more when my blood sugars are really good cause I'm like, if I felt like this all the time, I would be better at work. I would be better at sport. I'll be- I'll be a better person. 

[00:18:17]: When your blood sugars are low or too high and you're snappy and you don’t feel yourself, it's just like, you just feel like a bad person. And I think that's what I struggle with emotionally at this moment is that it's the mood that puts you in, and you need to be really mentally tough to get up and go and not snap at people if you know you're just feeling a bit.

[00:18:38]: That's what I struggle with, and I think for me at this age, it's something which I'm trying really hard to learn, and it's something I try so hard to do. I overcompensate a bit because I think it's a backlash of diabetes. I overcompensate to be so non-diabetic, which then is sometimes bad for my health.

[00:18:57]: And, you know, sometimes that can put me into worse situations because I'm literally pushing it away going, I'm fine. I can do anything. But actually, I'm not fine, and sometimes I can't do everything. 

Jack [00:19:08]: Jim, you speak so well on that, and I'm really sorry to hear about, like, those struggles with feeling like you could be a better person, and I can relate to that. And one of the things I've really tried to teach myself over the last few years is that it's okay, you can have those days where you just, you don't feel great, and to put less pressure on myself to do things.

[00:19:26]: Those days happen, and you can feel rough, but there's absolutely no shame in that. And you talked about physical stigma in that as well. And so, we've had previous guests on this podcast series that have spoken about the fear of receiving unwanted questions or comments when they're spotted wearing diabetes technology, such as an insulin pump or the continuous glucose monitor.

[00:19:44]: So, Jim, you've spoken about that stigma as, you know, a keen runner and footballer. Nicki, have you faced, whether it's potentially related to technology or other physical stigma, has physical stigma been an issue for you? 

Nicki [00:19:56]: It hasn't been so much of an issue for me. The most I do is kind of do the finger prick test three times a day to test what my levels are. So that can be something that's done very discreetly. Um, nobody knows really that you're doing it, you know, just occasionally if I'm out for dinner or something like that. I'll sort of under the table, you know, a little bit and people are, what's she doing sort of thing. 

[00:20:16]: Um, I mean, just, just going back to how Jim feels about his Libre, you know, I've- I've noticed on people now and obviously you get to know and you see it and I think it's such an incredible piece of equipment and it must be life changing for people rather than having to test all the time. 

[00:20:31]: And I don't think you should ever worry about that because anybody that knows and knows what that means and what that can- how that can change your life is probably in, in awe of- of what you're doing. 

[00:20:41]: And, um, you know, don't ever feel embarrassed about it, cuz I think it's a great piece of kit and it's much easier than getting a little finger prick thing out and going under the table in a restaurant.

Jack [00:20:50]: Yeah, absolutely. And Jim, you said that you've struggled with using the Libre. So how have you managed your running and football when it comes to the technology you use and the technology that you feel comfortable using? 

Jim [00:21:02]: Yeah, some really good points. And quickly on that, Nicki, like, it's such a lovely thing to say, and since I've got older, I've certainly owned it a lot more, and a lot of people are like, it's actually a cool- you should use it as like a, you know, a cool superpower.

[00:21:14]: And that is one thing I have but it has taken me time from, you know, and I'm still not there because I still refuse to get a pump. Like, I've been advised to get a pump, but I can't physically get over that, but I'll go on to that more. But on that Libre with sport, you know, it's a really, really good point.

[00:21:30]: And it's probably why I struggle with it so much is that I play so much football, I play a lot of cricket and it's things that are involving you basically on the ground. And I remember one time at university, my blood sugars weren't good at uni at all, and it was a football match and I had to wear it.

[00:21:48]: And, you know, there were ways in which I could kind of just about get round it by strapping lots of things on. But all this still was just like, when you're thinking about a game, the last thing you want to be thinking about is also my Libre might come off. And, um, someone slide tackled me, I fell, and it just ripped off.

[00:22:03]: And I remember being like... Oh, my gosh is- I can't. I don't want this anymore. I'd rather just check my bloods. You know, in my slightly immature mindset, I thought football is way more important to me than diabetes. Diabetes can actually piss off, football is what I want to be doing. This is annoying me, making me upset.

[00:22:21]: I don't care if my blood sugars are bad. I don't want this on. I don't want it to get in the way of my performance because I'm like that. And that's what really upset me. And not also in a sporting world but I remember also I was at a nightclub at university as well. And someone knocked it off and it just knocked off. And I was at my friend's birthday and I was just like, you know, all these little things, of course, it's not that bad.

[00:22:41]: There's worse things that can happen. There's way worse things, you know, with diabetes than your Libre coming off, but smaller things are, you know, their times sort of a hundred because you're putting it down to diabetes, which I hate. So therefore, it's kind of like this ongoing thing where it's niggling at you.

[00:22:59]: So, you know, I have struggled with having my Libre on with sport. I play a lot of sport and you know, it's something I need to figure out how to sort of slightly find ways around, but it's certainly something I do struggle with. 

Jack [00:23:11]: Those moments build up as well, I think, and they can become, yeah, much more of a kind of a package rather than those isolated moments.

[00:23:18]: And Jim, earlier you spoke about the importance of your mum and having support networks. I'd quite like to talk about that. So, when I was young, one of my best friends growing up would mock my diabetes and not in a nasty way, it was meant to- it was in a funny way and it was meant to make me laugh and we're still close friends now.

[00:23:37]: And when I was younger, that helped me because it made me feel like diabetes was just a part of me and that I was still accepted. And I've probably carried a level of humour with my diabetes throughout my life and try and be quite self-deprecating about it when I can be. And my wife is a really fabulous support, but she also helps me to see the funny side as well.

[00:23:56]: And I appreciate this is a very personal situation, a personal reaction. That's not the same for everybody, but I think to me, it really highlights the impact of having a support network. that you feel you can talk to about this. So, Nicki, how significant is your support network, friends and family? And do you feel that you can talk to them about diabetes, but also about stigma? And that, do they understand why sometimes you can feel the way you feel when you might have bad days? 

Nicki [00:24:20]: So, I've got a very close support network. Um, obviously my children, I had one child at home when I was diagnosed and that was really hard because I felt she took on the burden at sort of 13, as she was, of making sure that I was okay.

[00:24:34]: And certainly she felt that, you know, she felt very responsible for that and I do feel guilty. So, I do talk to my family. My partner's very supportive, but I'm a bit of my own worst enemy, because what I'll sort of tend to do is if people say to me, right, is there anything that I need to know? Is there anything I need to be prepared for?

[00:24:50]: And I'll, I'll say, no, no, no, it's fine. I've got it all under control. I've got stuff in my bag, or I've got my testing kit with me. So, I do almost self-sabotage in that respect, instead of going, well, actually, yes, because if I'm a bit crabby, could you just ask me to test my blood sugars? You know, so I do tend to sort of internalize it a lot more than I probably should.

[00:25:09]: And I think because of that as well, if I am snappy, people don't go, oh are your sugar levels okay? They'll go, well, what's wrong with you? Because I don't try and let it be my life. It is a part of me, I try and keep it as a small part of me, but I don't want it to become me. 

[00:25:24]: So, it is a really difficult balance is finding that support network and being open and honest about it without letting it become you so that you become diabetes itself and that disease and how it's going to affect your life. 

[00:25:40]: Um, and if I get a real downer, I will talk about what the future might hold and that that scares me. Um, cause obviously, you know, we don't know, we don't know what's going to happen to us, but generally I do sort of try and keep it in very internalized and I know that that's maybe not the best way to go about it.

[00:25:56]: I should be a little bit more open. But I have a very close network of family that I can talk to if I need to. 

Jack [00:26:03]: I think everything you said- I mean, you said how a difficult balance it is. And I think that's just so important. And ultimately, you can't help your reaction to it. That's your reaction and you- you choose to do that so I think owning that is fantastic and you shouldn't feel compelled to behave in a way that you don't want to behave.
 
[00:26:19]: Jim, what about yourself? Do you feel that you're at a position now where you can talk about stigma to people in your support network? 

Jim [00:26:27]: Yeah, I think, you know, definitely. And I think, you know, my defence mechanism personally is I use humour a lot with it. So, I really, really pound that humour. And especially when I'm in a kind of frame of mind where I'm a bit more relaxed with it and it's fine. 

[00:26:42]: And I'm so lucky, you know, I'm just so, so blessed in life that I've got the best friends who are incredible and that I've got the most amazing family, and I know that I probably take that for granted a lot because I know it's- I know it's not a massively common thing. 

[00:27:00]: But the problem I definitely have is, you know, I can put people into a false sense of security with it where I might be joking about it and then one day a friend will say something and I'll go that's not on, like that is not- you've just really offended me. And they're like, whoa, but you know- and I think that can be the issue and I think I could maybe also even do that with my family where if I'm not in the mindset and I’m having a, you know, a couple of bad night's sleep so my blood sugars aren't in the right kind of range and I’m really feeling it and I’m mentally a bit exhausted, mentally maybe not that well with it.

[00:27:30]: I can really snap and go actually that's not on, that's unfair. And I think it puts people in an unfair situation because I'm the one who's giving them the, you know, the pathway to do that and giving them the access to do such a thing. And you know, I do feel that I'm so lucky that my friends are there.

[00:27:49]: My- my friends are so good with my diabetes. At university, I got back from a night out, and I'd had too much to drink and they checked my blood sugars. My mum is so good, in the sense that, I'll admit this right now, still to this day, I'll be in tears to her about it at the age of 24. I'll just have, you know, random moments where I'll be on the phone to her crying and going, I hate this.

[00:28:11]: I've- I'm still no better at this since the age of two and she'll still be there at the end of the phone giving me the advice and giving me the support I need and I think to have that is more than a blessing. It's like honestly has helped me more than I can believe with having diabetes so, yeah. 

Jack [28:28]: She sounds amazing and there's absolutely no shame in having that reaction at all. Just staying on support network, I'm interested to find out from you both about your healthcare team's involvement as a support network. 

[00:28:40]: So, Nikki, you spoke about healthcare professionals already, but for any healthcare professionals listening to this, what would you want them to know as a result of hearing about some of the bad experiences that you've had, particularly with regards to stigma, and what would good support look and sound like for you from your healthcare team?

Nicki [00:28:58]: I think when you go to your healthcare team, the first thing they ask you is how have you been and you know that what they're asking is your sugar levels, you know, how your hypos or hypers have been or things like that. Um, they're asking about your physical things and I think actually a nicer question would be to ask how you're doing mentally.

[00:29:15]: You know, how are you coping? How's it been for yourself? Have you been in a good place with it? You know, those kinds of questions, because it is as much a mental battle as it is a physical one with diabetes, because there is no escaping it. You know, there is no switching off from it. You're aware of it.

[00:29:32]: It's in the background all the time. And I think, you know, I've got a lovely healthcare team. They're very good at, the physical stuff, but not so good at asking me how I've been emotionally. And I think that is- it needs to be part of your diabetes care, really. 

Jack [00:29:46]: Yeah, absolutely. I- I would back that as well, particularly when it comes to annual reviews. There's a lot of questions about your medication, but less so I find about offering emotional support. Jim, would you say that's a similar situation for you or is it a different situation for you?
 
Jim [00:30:00]: Yeah, no, I would say that- you know, it's very similar, especially growing up. I mean, I remember being young and, in my mind, I was being told off and being really almost reduced to sort of tears on you shouldn't be eating sugar, you should be weighing all your food. You should be, um, you know, you should- why you not doing this and this and, you know, age like eight I was thinking what on earth? Like this is just unfair.
 
[00:30:27]: And I'm not- not only am I getting asked how I am, you know, I'm getting feeling really pressured about my HBA1C and feeling really nervous and, you know, dreading going to hospital and dreading being told all this.

[00:30:39]: Um, certainly as I've got older, it's been, you know, topics I've wanted to discuss. Like when you're, you know, going to university, I really had no guidance on how do you survive at university? There's going to be like some drinks going around. There's going to be social situations. How do you survive that?

[00:30:55]: And there was nothing of the sort which I could have really done with. I knew at that age how to manage my bloods. I know how to, you know, do that. It's not a case of that. It's a case of, you know, how do I go into these situations, these new situations where I'm hitting a growth spurt, I'm starting new things.

[00:31:12]: How can I deal with diabetes in those? And that's something I really, really wish I'd had rather than just, right, HbA1C, how's your carb counting? Okay, you're not carb counting at the moment. Okay, why are you- do you know what I mean? I need fresh advice. I need advice on my growing and that sort of thing.

[00:31:30]: How am I going to train for this run? And I never really have that, I feel. 

Jack [00:31:34]: Yeah, it's a shame. It's something that we've heard from, you know, guests on this series as well, is that the emotional support for diabetes could be better within diabetes pathways, and it's something that we're really pushing to change.

[00:31:48]: So, Jim, Nikki, the last question that I have for you both is, what advice would you give to anybody listening to this that has previously faced diabetes stigma, or may unfortunately face stigma in the future, and how they might cope with this? Nikki, if you want to go first. 

Nicki [00:32:03]: I think be brave. Explain what you're comfortable explaining and make it pertinent to you as well. Make it personal and just let people be aware of what it actually means. It's bandied about so much, especially at the moment with, uh, the increase in especially type two diabetes, that people are almost blasé about it.

[00:32:22]: And I think people need to realize just how serious both types are, um, how it can affect your life. So, I think be brave enough to say, actually, that's not right if that's what you feel and, and make it personal, make it about you and make it about your journey because everybody's journey is different.

Jack [00:32:39]: That's absolutely spot on. Yeah. And Jim, what would you add to that? 

Jim [00:32:43]: Yeah, no Nicki, I think that's so true. I would also say, you know, just you've got to try and own it. You've got to use it as almost something that's quite cool and quite like unique and use it as something that you can literally feel empowered by.

[00:32:59]: Just, you know, scrap everything that comes with it in your mind and actually realize that what you have is something that's going to make you a stronger person. It's going to teach you, you know, different sort of lessons in life. A lot of people don't have it. So, the strengths you're going to gain from living with it will really help you in everything you do.

[00:33:18]: So, if you do smaller things with it, it means so much. And I would just say, yeah, use it as a superpower. Think of it as something that's really cool. And just explain it. On the whole, people just like things explained and the second you explain it, you'll actually feel a bit of relief, especially to people you don't know.

[00:33:37]: So, I think just explain what it is and be open. Um, that's what I would say. I know that's not easy, but that's something I've come to learn. 

Jack [00:33:45]: Thinking of it as a superpower is fantastic. I absolutely love that. Jim, Nicki, I hugely appreciate the opportunity to talk to you both today. Thank you so much for joining us on the podcast and for sharing your experiences about stigma and living with diabetes. Thank you so much.

Jack [00:34:05]: 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. For more advice and support, search Diabetes UK online, or check out the information and links in the episode notes. 

[00:34:22]: 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. Thanks for listening. See you next time.