Sources of distress
Most interviewees considered diabetes to be emotionally difficult at least some of the time.
I’d be light hearted about it but at the same time, I’d be like sitting there going I wish I didn’t have this bloody thing (Male, 30).
Self-consciousness about diabetes
A minority of young adults (n
12) described feeling self-conscious about their diabetes and its management, and were worried about how others viewed them. The strength of these interviewees’ self-consciousness varied. Some felt ‘awkward’ when they had to manage their diabetes around others. Others had stronger feelings and perceived diabetes to be a stigmatizing, discrediting condition that risked undermining their identities as young, healthy people. These interviewees felt that their diabetes risked making them inalienably ‘different’ from other people.
A lot of people might feel a bit awkward if I was to inject in front of them (Male, 30)
People can see it, I think that’s the worst thing (Female, 27).
I don’t want to have to inject in front of them [strangers]. I think people do still find it a bit strange. It’s not heroin but it’s still a bit odd (Female, 23).
Interviewees who appeared to have strong stigma-related perceptions tended to avoid activities that they felt would highlight or reveal their diabetes to others. Such activities included wearing CSII devices (Continuous Subcutaneous Insulin Infusion), or, in the case of two young adults recruited from the clinical setting, joining diabetes-related support groups on social media sites such as Facebook. Avoiding such ‘stigmatizing activities’ enabled these interviewees to suppress their condition and allow them to present identities as ‘normal’ young adults in front of other individuals.
All my friends are on Facebook and I don’t want them to see that I have diabetes. Other people are probably like, ‘I don’t care if people see I have diabetes’. That’s why I wouldn’t join those groups [support groups]. With me, half the people I’m liking on Facebook wouldn’t have a clue that I have it (Female, 24).
Interviewees reported that their feelings of self-conscious were generally strongest during the first phase of young adult adulthood (18–22 years of age), becoming attenuated as they transitioned through their twenties. However self-consciousnesses could come to the forefront again during major life or environmental transitions, such as beginning a new job or moving to a new country. These were generally situations where interviewees either lost access to previously supportive audiences who could help to (re)frame diabetes management as a ‘normal’ activity, or forced interviewees to manage their diabetes in front of new and (potentially) unsupportive audiences.
It is kind of hard with working. You don’t want to be taking out a diary and writing down and people looking at you. I feel a bit uncomfortable. I don’t know the people that well inside there. In a new work environment I’d feel a bit uncomfortable. In my old work I would have cared less. I would have gone off and sat down for as long as I needed (Female, 23).
Type 2 diabetes
Just under half of interviewees (n
15) described feeling angry and frustrated at Type 2 diabetes. There were two reasons for this anger. The first was that interviewees felt that there a strong risk that they themselves could be misidentified as having Type 2 diabetes. Interviewees felt that the general public had a very prototypical and negative view of diabetes (derived from media reports of Type 2 diabetes that linked the condition to moral laxity, fatness, laziness, eating too much candy etc.). that they mapped onto all people with diabetes, including people with Type 1. These participants felt that they constantly had to differentiate between the two conditions to ensure that they were not stigmatized for having Type 2 diabetes. These interviewees themselves appeared to have negative perspectives of Type 2 diabetes; they seemed to see themselves as risk-avoidant, responsible subjects who developed diabetes through no fault of their own, whereas they thought that people with Type 2 developed their diabetes as a result of moral failings (i.e. inabilities to control their bodies and appetites). Notably, there were a number of interviewees (see Table ) who were concerned about being stigmatized for having Type 2 diabetes but who did not
feel self-conscious per se about having Type 1 diabetes (e.g. they had little concerns about injecting in front of other people as long as they were not mistaken for having Type 2 diabetes). It was also evident that whereas self-consciousness about Type 1 diabetes often attenuated as interviewees transitioned through their twenties, concerns about Type 2 diabetes appeared to remain strong.
That’s something that drives me crazy, Type 1 and 2 diabetes. It makes me so annoyed. Type 1 diabetes, you don’t get it because you’re overweight. People are like, ‘oh which kind do you have? Do you have the really bad kind?’ I’m like, ‘what do you mean by that?’ Or they’re like, ‘oh I’m sorry, did you eat too many sweets?’ Of course that’s why I have it (Female, 23).
We didn’t bring diabetes on ourselves. We didn’t have a choice. The majority of Type 2 s have a choice and they chose not to do what they should be doing. You feel like you’re branded with the same brush as them (Female, 30).
The second source of interviewees frustration was a feeling that Type 2 diabetes was receiving disproportionate attention and resources from the media, policy makers and charities. In contrast they felt that Type 1 diabetes was often neglected by these agencies and actors.
I really do think that Type 1 gets left behind. Even yesterday was world diabetes day and on the news it was all oh ‘if you improve your lifestyle and if you do this and that’ you improve your risk and I’m there shouting ‘this is Type 2 diabetes’! (Female, 28).
I think with diabetes a lot of it [money/resources] goes to Type 2 prevention, whereas Type 1 tends to get left in the dark and doesn’t get the services it should get (Female, 26).
Day-to-day management of diabetes was considered to be emotionally difficult by just over half of interviewees (n
18). Diabetes management frequently took up a lot of their time and energy, to the extent that other aspects of their lives were often neglected. Diabetes management had a visible component that other people could easily see, related to diet and injections. Underneath that, however, there was a larger element that other people were unaware of, the hidden, continually needed calculations and restrictions.
I don’t think people really understand what’s involved. It’s pretty much on my mind the whole time. There’s no day off from it (Female, 30).
I wouldn’t wish it on anybody. It’s awful. You have to do this and you have to do that. There’s more involved than just doing the finger when you eat (Female, 28).
It’s a huge thing. But no one can see it so it’s always there and it’s massive for you but it’s invisible for everybody else (Male, 24).
A majority of young adults (n
21) considered diabetes to be a limiting influence on their lives, either preventing them from engaging fully in day-to-day activities such as work or forcing them to spend an excessive amount of time on diabetes management. Interviewees said that they often struggled to find an acceptable balance between their diabetes and their daily activities of their ‘normal’ lives.
I hadn’t drank for years because I didn’t know how with the diabetes. I didn’t go to festivals with my friends because I didn’t know what would happen with my diabetes there (Female, 24).
You feel like you’re dedicating a lot of your time and effort and emotions into this aspect of your life and other aspects are kind of being neglected. Stuff like college work can get affected and going out with your friends. You’re concentrating too much on this element and the rest of yourself is neglected a bit (Female, 27).
A number of female interviewees felt that they put on weight easily, more easily than their female friends and colleagues, which they attributed to their need to take insulin. They also noted that they had greater difficulties losing excess weight once they had acquired it.
I do find your weight does go up. I know it’s a side effect of insulin but since I’ve been on the pump, definitely my weight’s increased (Female, 28).
Interviewees who had difficulties controlling their diabetes were often particularly frustrated and upset: difficult control made interviewees feel anxious about the future; hypo-/hyper-glycaemic states could negatively impact mood; and it made interviewees feel that they were contravening norms governing how diabetes was ‘supposed’ to be managed. Poor control therefore could have primary (biological) and secondary (psychological) impacts on mood.
I just get fed up. Fed up injecting, fed up being tired. Sometimes I just feel like I’ve no life because I’m just exhausted. It’s not fair on the kids. It’s so hard to get up in the mornings because I have such high sugar readings (Female, 29).
No one understood how frustrating it can be sometimes when you’re doing your damndest to get it right and it’s not working. Because it’s your health on the line, it can be very upsetting (Female, 30).
Interviewees tended to blame themselves whenever anything went wrong with their diabetes and guilt appeared to be an ingrained feature of many interviewees’ diabetes management routines. Interviewees often seemed to see themselves as solely responsible for their diabetes management and felt that they had therefore personally failed when its management became suboptimal
I felt guilty because I knew I should have been stricter than I was. It was my own fault for my levels being high (Female, 27)
I’m always high or low. My sugars are never normal. I’m feeling crap then as well. That’s my own fault for not doing it. It’s just a big circle (Female, 24).
Healthcare system struggles
A number of interviewees (n
16) described feeling frustrated as a result of struggles with the healthcare system. Some interviewees described long fights with the health system bureaucracy to obtain diabetes technologies such as CSII. Others were frustrated by a lack of integrated healthcare services, forcing them to go to clinics on multiple occasions for different tests. Still others were angry at long waiting times between appointments. A common source of frustration was lack of continuity of care with doctors, and a lack of time with healthcare professionals (especially doctors) when they finally got to see them.
When I come away from clinic, I would never come away happy. You just feel so frustrated by the whole service and let down (Female, 28).
Complications and the future
Over half of interviewees (n
22) were concerned about what would happen to them in the future.
I have printed pictures of somebody who’s had their leg amputated up on my fridge. Any time I feel like having something bad I look at that and say, that will be you in twenty years time if you don’t keep yourself in check (Female, 29).
These interviewees had strong fears about developing diabetes-related complications, and lesser though still present fears about dying. Fears relating to amputation were particularly intense. Interviewees felt that their concerns about the future increased as they transitioned through their twenties: they realized that they were not invincible, and they became increasingly conscious about the possible consequences of any poor control that they had in the past. Many young adults in this study had also transitioned out of specialist young adult clinics and in to general adult health services; as such they were beginning to encounter- for example in hospital waiting rooms- older people with diabetes who had experienced amputation, blindness or other serious consequences of poor diabetes control.
That’s the fear, the complications of diabetes are awful (Male, 28).
I suppose because there were so many years that it was uncontrolled that I do kind of think, in the future will this effect kind of things when I’m older. Will I be one of those people that has to have their foot amputated (Female, 24).
I’d be sitting there beside an old man with a leg amputated and another blind woman beside you. It was so depressing. What the hell like? (Female, 29).
The unfairness of diabetes-related risk was of concern to some (n
7) interviewees. These interviewees reported feeling anxious because there was only a probability, not a certainty, that things would work out for them and they would not develop diabetes-related complications if they took good control of their diabetes. Several of these interviewees made reference to other young adults with diabetes who they considered to be excessively risky (for example, taking drugs or binge drinking) and yet who did not appear to experience diabetes-related complications. It appeared that for these interviewees, diabetes was a universe where good deeds often went unrewarded and bad deeds unpunished.
And then there’s the whole long-term complications thing. I know you should look after yourself, but there’s no guarantees. There are sometimes when I do get stressed out about it… The friend that I mentioned, she does everything wrong and has had zero repercussions from it. She has no complications or anything. It just seemed a bit unfair (Female, 30).
I have necrobiosys in my arm and I think whenever my sugars are high I can see that worsening. It seemed a bit unfair. I was trying to do everything right. It just seems very unfair. I’d always try to take care of my sugars and do a bit better (Female, 30).
Negative media representations
Media representations of Type 1 diabetes were a source of anger to a small number of interviewees. These interviewees felt the media representations of Type 1 were invariably predicated upon tragic models of illness, usually featuring older people struggling to live with the consequences of complications. Interviewees were quite angry about the absence of positive (or even balanced) media representations of Type 1 diabetes.
People like, articles and news reports tend to go with worse case scenarios and it’s scary. There are sometimes when I do get stressed out about it. There was one programme and they had some poor guy and he lost half a foot. I was like ‘Jesus Christ’. Then there was some poor woman and while they were filming it she died. I was like ‘holy crap’. It was very extreme. I don’t want to be told that by the time I get to 60 I’m going to have one leg and be blind. (Female, 30).
Pregnancy-related concerns were common amongst female interviewees. Interviewees were particularly concerned about miscarrying and the risk of having large babies, and the effects that this largeness could have on their own health and on their baby’s. Interviewees were also afraid that they would become pregnant during a period where they had poor control.
The whole idea of having a baby was going to be a new experience and really exciting and now for me it’s really dampened by the fact that I’m going to be even more conscious of my diabetes (Female, 30).
What’s the point in trying when I could have a miscarriage. I think its 60/40 that I’ll have a miscarriage more times than I’d actually have a baby. It does my head in basically (Female, 24).
Interviewees used a number of strategies to manage diabetes-related distress. One was to avoid- as far as possible- thinking about the negative aspects of diabetes. A reason why interviewees appeared to became so annoyed at negative media representations of diabetes because they disrupted their attempts to focus on the positives.
I think a lot of time so much is focused on the negatives and I don’t really like to think about that (Female, 23).
I do think it would be good to look at the positive, success stories, if there are any (Female, 30).
Interviewees also made downward comparisons with people who they considered to be less fortunate than themselves, which served to represent their own circumstances in a more positive light. Some interviewees compared their current diabetes management practices with their past practices in order to demonstrate that their diabetes management had improved with time and they were on an upwards rather than downwards trajectory (this helped to manage fears about the future and developing complications).
Well there’s no real point in moping around, ‘oh God, poor me’. Just get on with it. There’s people way worse off. There are way worse diseases than diabetes (Male, 30)
For years I didn’t test at all so I’m like, at least I’m testing. To me it’s ok. It could be better but it’s ok (Female, 30).
Another strategy was to put a sustained, conscious effort into seeking to develop increased control over diabetes, for example through acquiring diabetes technologies such as CSIIs or seeking to go on structured diabetes education courses. Knowledge acquired from structured courses seemed to help to empower interviewees, helped them to feel that diabetes management problems were errors that could be fixed rather than the outcomes of personal failings, which in turn ameliorated feelings of guilt and frustration.
I’m a lot more relaxed about it than I had been. Like I was constantly frustrated about it, why isn’t it working. But now [since the structured education course], if it’s high, before I would have gotten really annoyed and sometimes even upset if my sugars were high but now I go, ok obviously I miscalculated how much that piece of cake was and then I learn from that (Female, 30)
Social support from healthcare professionals
One strategy for managing diabetes-related distress was present in most young adults’ accounts, and therefore we will consider it in more detail here. That solution was to obtain diabetes-related social support, which young adults received from three main sources: healthcare professionals, family members and peers with diabetes.
Young adults felt that having opportunities to talk to doctors and nurses often helped them to manage their feelings of diabetes-related distress.
I think the nurses don’t get enough credit. There’s the social aspect [to what they do], the caring side (Female, 23).
Young adults also thought that healthcare professionals should provide emotional support to young adults as part of their standard care.
I honestly think there should be some kind of emotional support. That’s part of your health that should be addressed in the clinic (Female, 23).
However many interviewees noted that they rarely had the time or opportunity to discuss their diabetes-related emotional problems in clinic appointments. Appointments with doctors were often brief, occurred only once or twice a year, and young adults often saw a different doctor every time that they went to their diabetes clinic. Such doctors were often junior doctors in training who lacked expertise in diabetes and the psychosocial issues associated with the condition. Many young adults said they were uncomfortable bringing up diabetes-related distress problems with doctors who were effectively strangers. Appointments with doctors often focused on processing biomedical information, such as Hba1C scores, with emotional and psychosocial issues bracketed to one side. Appointments with doctors who young adults had not met before were often taken up with going over historical information, such as date of diagnosis, which further reduced the time that doctors had to explore young adults’ feelings.
You go in and see the registrar and they don’t know who you are. You don’t feel open or comfortable talking to him about how you’re getting on. I think seeing the same person helps big time (Female, 23).
When you go to the doctor they’re all about the diabetes, looking after your control there’s nobody there to talk to say ‘have you had enough of it?’ That would be something that would really help. A bit of support for that would be really worthwhile. To know that it’s not only you (Female, 29).
There was one or two doctors that made flying visits in and out and didn’t really treat you like a patient. It was more like you’re a file. They just have a quick look at the file and look at numbers without discussing any of the issues with you (Female, 27).
Young adults’ relationships with nurses were often better, but again the support that nurses provided was often not enough, only occurring in the context of brief clinical encounters that took place every six months to a year.
I mean my diabetic nurse got me through it all. She was amazing, absolutely amazing (Female, 28).
The nurse specialists were brilliant. (Female, 30).
Support from family members
Young adults also received diabetes-related social support from their families. The support provided by families was considered to be important by most interviewees. Families provided tangible support, mainly in the form of taking note of interviewees’ health, particularly their blood sugar numbers and what they were eating. Tangible support was important because it helped to increase interviewees’ feelings of mastery over their diabetes, and also helped reduce anxieties relating to acute diabetes complications such as hypoglycaemia.
My wife would be what you’d call a concerned wife. She would be very strict around diet so she’s good at keeping me in line and monitoring what I’m eating (Male, 30).
Family members also provided young adults with emotional support. Emotional support manifested itself in several ways. Family members often reassured young adults that everything would ‘work out o.k.’ for them, which helped interviewees to regulate any feelings of anxiety that young adults had about developing diabetes complications. Family members also actively intervened to protect young adults from distressing items in their environment, such as negative media representations.
I went to this diabetes focus group, there was two people sitting there and they were both talking about having complications. I came home and was like to mum, ‘oh God, I’m nowhere near that stage in my life but still that’s kind of a scary thought to think that could have complications’. But then, as my mum said, loads of people who don’t have any other illness have complications or can’t get pregnant (Female, 23).
My mum was recording this programme and something came up on diabetes and complications. She deleted it because she knew if I saw it I’d have a fit (Female, 24).
However family support on its own was considered to be insufficient by many interviewees. The interviewees who took part in this study were in the second phase of young adulthood and had often left their family homes, which meant that they usually received less intensive support from their families compared to when they were younger. Family members sometimes themselves became very anxious about young adults’ diabetes management, forcing young adults to spend as much time regulating their family members’ emotions as they did their own. Young adults felt that family members’ support could at times edge towards social control attempts. Family members were also often felt to lack an understanding of what it was like to manage diabetes; family members’ supportive attempts therefore sometimes miscarried as they did not consider the impact that their actions would have on young adults.
I think my family don’t really understand the mental side (Female, 27).
I went on holidays in August and my aunt texted me to say there was an article in the Irish Times to say diabetics shouldn’t wear sandals because of the risk to their feet. I was like, have a bit of common sense. I was so annoyed over that. I was like, have a bit of tact (Female, 30)
I just get anxious and over think things. At the weekend it would be like, I kind of spend most of the day in bed. Just because I skip meals and then sometimes I just go out and buy junk and stay in my room. I could go home to my family but then I end up getting stressed out down there. Just anxiety and stress (Female, 25).
Support from peers
As was reported in the methods section, a large number of interviewees joined diabetes support groups on the Internet, especially on Facebook. Interviewees felt that other people with diabetes had empathy for their experiences and would not judge them or become anxious if they admitted that they had problems. Most interviewees said that they wanted to receive support from people who were their own age and who had Type 1 diabetes; they did not want to become involved with older people with Type 2 diabetes, either in terms of giving or receiving support.
It’s great to have someone who understands (Female, 30).
I think the best thing ever is to have someone else who’s in the same boat as you (Female, 30).
Peers with diabetes helped young adults to regulate negative emotions. They provided young adults with positive examples of living with diabetes, examples that highlighted that living with diabetes was often difficult, and that interviewees were not alone in their suffering. Peers also provided young adults with practical information and motivation that interviewees could use to improve their diabetes control, which in turn could help them to reduce their feelings of being overwhelmed by their diabetes.
X kept me sane, she was like, you’re not doing badly, calm down. It’s one thing to hear it from doctors but when it’s somebody else who’s actually been through it (Female, 30)
It’s supportive to hear other people say that they’re not all perfect at managing their diabetes. It’s hard. (Female, 28).
Another advantage of peer support was that it was much more readily and easily attainable than support from healthcare professionals, who as noted previously often only saw interviewees several times a year. In contrast, some interviewees were able to receive peer support several times a day, whether from online or offline sources.
I’ve spoken to three or four people through the Facebook group who’ve just been recently diagnosed and they’ve had questions for me. I’ve said ring me any time, I don’t mind if you need to talk to someone and that alone is a relief to hear, to know that there’s people there to talk to, again, because no one else really gets it (Female, 30).
There were two notable issues about diabetes peer-support groups, however. One was that they were composed of untrained individuals who were sometimes quite young and quite distressed about their diabetes. One female interviewee, who helped to run an Internet support group, felt imprisoned by a need to convey a positive impression to other young adults with diabetes. So while she joined peer groups to receive emotional support, she ended up becoming more distressed out of a need to demonstrate to other young adults that diabetes was not distressing.
I’m not a support worker. I’m quite worried that I’m not providing enough support for these people. I find it difficult to approach someone who I can see is having a problem. I think they [other young adults with diabetes] expect me to have it perfect. I don’t know. People have said when they meet me, it’s great, it just shows that diabetes doesn’t have to wear you down. I don’t really want to admit to them if I’m struggling. I feel like I play this role, they look at me and go, there’s hope there so I don’t want to ruin that for them (Female, 27).
Secondly, a number of young adults noted that peer-support groups required resources for them to be optimally successful. At a minimum, real-life support groups required rooms in clean, well-lighted places where meetings could be held. Support groups- both online and off-line- also demanded significant amounts of time and effort from moderators and group organizers. These time demands could at times cause group moderators to experience some difficulties, as they usually ran these groups while working full-time jobs and juggling other commitments such as children. Several peer-group organizers who we interviewed noted that they had approached hospitals to ask for small amounts of funding to support their groups; however while hospitals were often enthusiastic about the idea of young adult support groups, they said that they were unable to fund them in any way.
I said to a consultant, ‘I know the Irish health system won’t want to know because it may cost money’. He just laughed and was like, forget it. He said he can’t get what he needs and he is the hospital, not a support group (Female, 30).
Distress is not an issue
Finally, four interviewees (see Table ) indicated in their interviews that they were not distressed either by having or by managing diabetes.
I’m not stressed about it [diabetes] (Female, 30).
I was fairly laid back about it [diabetes] (Male, 30).
I’ve had it long enough that it seems like I’ve always had it. I don’t remember it ever being hugely problematic (Female, 25).
Two of these interviewees were male, two were female. Three were thirty years of age, one twenty-five. Three were married, the other in a long-term relationship. Three had been diagnosed with diabetes in their twenties, the other in her late teens. All indicated that they had positive relationships with their healthcare professionals. Two worked in finance; the other two had worked in finance in the past, and at the time that the study was conducted had gone back to University (both to study science subjects). All four therefore appeared to have support from the official health system, had stable personal lives, were educated, had quantitative backgrounds. All four appeared to take active problem-solving approaches to their diabetes, with three of the four noting that they preferred to solve diabetes-related problems for themselves rather than contact their diabetes clinic.
I’ve a maths degree originally, so I was working out tables for how much sugar to set off against the carb intake and working out how much carbs I was eating and so on (Male, 30).
I would be the kind of person who’d just figure it out myself. But you know, sat down, read what the disease was, how it’s generally treated and how the regimes work (Male, 30).
These interviewees also described themselves as being flexible and able to deviate from diabetes management guidelines without becoming anxious. They noted that they had adjusted very quickly to having diabetes. Two of these interviewees felt that that their lifestyles changed relatively little after they were diagnosed, and one said that his brother had previously been diagnosed with diabetes, which meant that his life had already been preadapted to diabetes to some extent prior to diagnosis. These interviewees also felt that they were psychologically resilient and able to deal with adversity without becoming overwhelmed.
It wasn’t such a devastating thing at the end of the day. That’s my personal opinion on it (Male, 30).
I think I’ve always been quite, most people would say, too laid back a person. I always manage my stress levels very well. I suppose I just try and take it all in my stride and really not stress about it (Male, 30).