Optimism and positivity.

Our study demonstrates that participants with T2D who appreciate the value of being alive also “wish to live longer” and frequently express gratefulness for not having developed any complications related to their disease. Similarly, information from the FGDs conducted in this study indicates that most T2D participants believe that a right “mental attitude” spurs better self-management practices. For example, several participants with T2D feel that they should first start by “being honest with themselves” if they sincerely wish to embody the habits that come hand-in-hand with optimal self-care practices.

“If there is a problem with their attitude [towards the disease] then everything will take a turn for the worse. So, it depends on their attitude and how they see the sickness in themselves.”

(64, Female)

“I want to be honest to myself for the sake of my health. Only then I can certain I will not fail or miss taking my medications.” (60, Male)

Many individuals with T2D interviewed in our study adopt a strongly positive attitude towards their disease to the degree that they “feel healthy” despite having T2D. Most of them express indifference about being diagnosed with T2D and remain convinced that they can effectively manage their illness. They are confident about being well-equipped with the information required for appropriate disease management, especially in relation to medication compliance.

Many T2D participants display a favourable attitude towards modern medicine and express little hesitation about consuming medications. They also claim it takes minimal effort to comply with the recommended medication timings suggested by their general practitioner (GP) and pharmacist. Generally, insulin users in our study have positive views about using injectables and dismiss injecting insulin as being painful. These beliefs are primarily driven by the optimism that disease-related complications can be fully averted by being compliant with medications.

“I believe ‘Western’[allopathic] medications work very fast in bringing down sugar levels. For me, ‘Western’ medications are important because you can see from research results that science has progressed really far.” (52, Male)

“Definitely no [developing complications] doctor. If I take my medications accordingly and follow the advice of the doctors, I foresee no problems.” (42, Male)

Acceptance.

HCPs such as GPs, pharmacists, and nurses confess that it takes time for participants with T2D to grasp that they need to live with T2D for the rest of their lives. Grappling with the immediacy of reality, they eventually accept the idea that T2D has occurred in them with a sense of partial resignation. They profess they have “come to terms” with the realities of their disease. They quickly move on to develop the mental fortitude required to cope with the sudden changes to their ordinary way of living.

“At the end of the day, you have to overcome it yourself. You need to reach some kind of understanding. First, you have to come to terms with yourself. Look, you have diabetes and you’ve got this sickness. So the only way to make you better is to stick with your medications.” (44, Male)

With the passage of time, we found that the acceptance of their disease cultivates better medication compliance in T2D participants. They no longer struggle with the initial ambivalence related to frequent medication non-adherence. They become unperturbed about taking medication in the presence of others (especially injecting insulin) and easily conquer the initial fear associated with insulin utilization.

“I remember being late one day, I had to stop by at the petrol station. I got out [of the car] and started to use my insulin. A few of my friends were coincidentally there too. They asked me ‘what’s this?’ and I answered [nonchalantly] ‘well it’s insulin’. So no worries there.” (59, Male)

Insight.

Participants with T2D perceive diabetes as a chronic disease that can only be controlled and will “always remain in our blood”. They consider the presence of physical symptoms an unreliable indicator of poor T2D control partly because these warning signs remain imperceptible while having high blood glucose levels. Therefore, they often yearn to control their disease better, knowing full well complications can occur due to poorly controlled blood glucose levels.

T2D participants place a high degree of faith in the efficacy of medications prescribed to them; some even confess that “it will really bring down your sugar levels”. They are acutely aware of the dangers of non-compliance and realize that it is imperative to consume medications as advised. Additionally, they believe that taking medication in accordance with the recommended timing schedule does play a crucial role in stabilizing blood glucose levels.

Individuals with T2D in our study believe insulin is a far potent alternative when compared to oral medication and clearly indicate a greater preference for insulin over oral medications. They also often become more receptive to the idea of insulin commencement once their GPs successfully convince them to do so.

“Why should I take insulin? And then one day came along this doctor, advising me that it is good for me. Now I feel healthier [after starting insulin]” (70, Male)

As far as lifestyle modification is concerned, most T2D participants find the adherence to dietary restrictions burdensome only at the preliminary phase of their disease. Moreover, they believe these dietary measures are critical to the long-term control of T2D.

“Initially, when I was told to control my diet, I thought it was missing it all [food]. But that was only in the beginning. Soon, I became accustomed to it.” (60, Male)

“You see, everything you consume will affect your sugar levels. You have to understand that. So there is a limit to everything. If you don’t control it [food], your sugar levels will increase”. (52, Male)

Awareness.

From our interviews, having adequate knowledge about the disease fosters better awareness in T2D participants, which in turn closely mediates the “willpower to change themselves”. Therefore, well-informed T2D participants acknowledge that optimal disease control requires both medication compliance and the sustenance of therapeutic lifestyle changes in equal measure. They believe that it is necessary to consume lifelong medications despite having learned medications can, at times, cause certain undesirable side effects.

Participants with T2D recognize the importance of following appropriate dietary measures to manage their disease and often attribute uncontrolled blood glucose levels to poor dietary habits. They are cognizant of the types of food that are suitable for consumption in individuals living with T2D. For example, the intake of refined sugar is considered “dangerous”. Therefore, most interviewees with T2D squarely blame the overconsumption of sugar (e.g. drinking sugary beverages) as the principal cause of T2D. They believe that an indulgent lifestyle (lacking both dietary restraint and adequate exercise) is most likely the root cause for having acquired T2D in the first place.

“For me, diabetes is self-inflicted. Because I feel that in the past, I did certain things that might have caused me to have this disease. My parents never had diabetes. I am a diabetic because I did not have restraint over the food that I consumed.” (61, Male)

Additionally, participants with T2D are highly conscious of the need for adequate physical exercise and how it could potentially help achieve better control of their disease. Many T2D interviewees believe that exercising can work as an adjunct to reducing blood glucose levels in their bodies.

“It doesn’t matter what my sugar levels might be, I will do exercise and look after my diet so that I will not experience any complications” (80, Male)

“I love to exercise; it will bring down sugar levels in our body” (65, Female)

Vigilance.

Participants with T2D acknowledge that diabetes is a disease that should not be taken lightly. During FGDs, these individuals state that they remain in a state of constant vigilance—they are “more careful” and watchful for any T2D related complications. They also tend to be mindful of recommended lifestyle changes such as exercise and dietary recommendations. They frequently investigate fluctuations in their blood glucose levels using glucometers at home.

“From what I know, diabetes is a serious sickness for me. You need to take good care of yourself to overcome this sickness.” (59, Male)

Coping mechanism.

Most participants with T2D believe that God determines their destiny and, by default, the progress of their disease. They rely on God to provide deliverance from any anxiety that stems from the inner insecurities about the nature of their disease. Some T2D people go so far as to adopt a ‘man proposes, God disposes’ ideology.

“I leave that [the way the disease progresses] to God. You do your part and ultimately God decides.” (70, Male)

More secular-minded T2D participants resort to thought avoidance techniques to negate negative narratives about the prospects of their disease. These T2D participants also view life as being impermanent. As a consequence, they embrace uncertainty and live life as determined by fate.

“Talking about kidney-related complications and all that, you know, there are many things in this world that are basically unknown doctor. Nothing is certain in life.” (42, Female)

Denial.

Nearly half of the participants with T2D in this study expressed initial difficulty accepting the diagnosis of T2D. This state of denial was reinforced by assuming that being previously “active” (due to the nature of work or engaging in sports activities) should have prevented T2D.

“I couldn’t accept reality [diagnosed with T2D]. I felt I could just go on with my life as usual. I made sure I did more exercise. I still indulged in food.” (52, Male)

“I should not have been diagnosed with diabetes. I was an athlete, so I believe I should not have this disease. I did all sorts of exercise activities. Why does this have to happen to me?” (60, Male)

Pessimism.

Many participants with T2D feel depressed about having contracted diabetes. The abruptness in the demands for sudden lifestyle modifications imposes “too much restriction” to the conventional way of going about with their lives. This situation affects their emotions in such a way that some of these individuals think that it’s not worth living any longer. This notion is especially true if they have to endure any complications as a result of their disease. After a protracted period of time, some of them descend into helplessness characterized by low morale or a “giving up” mentality. On the other hand, a small group of T2D participants remain relatively untroubled as they have surrendered to the notion that everyone will develop T2D at some point in their lives.

“Why try so hard and control it [T2D]? Just enjoy life as it is. One way or another, you will definitely end up getting diabetes. You just need to take your medications. Life goes on.” (65, Male)

The frustration of taking medications all their lives appears to dominate the thoughts of most T2D participants. They describe getting fed up with taking medication all the time and wanting to “give it a break” by going on occasional ‘drug holidays’. Most importantly, they perceive taking more medications is synonymous with the deterioration in their general health status.

“When they told me that I really need to take medication for the rest of my life, my heart literally skipped a beat. I was totally upset. I really dislike taking medications.” (53, Female)

“Sometimes you feel like ‘it’s ok, you don’t need to take it today, just give your body a rest’. It’s that kind of feeling.” (28, Female)

Reservations.

There appears to be an initial reluctance on the part of interviewees with T2D to start taking T2D medications early. GPs reveal that they receive frequent requests from T2D people to delay the commencement of T2D medications. This avoidant behaviour becomes even more apparent when GPs suggest the introduction of insulin into their medication regime. They vehemently dismiss the need for insulin by reiterating they prefer oral medications instead. Much later, when the stark realization sets in, participants with T2D slowly realize they now “have no choice” but to take their medications as advocated by HCPs.

“But I have this sickness, I don’t really have a choice. We have got to take our medications. What else can I do? We have no choice but to take our medications” (65, Female)

Compliance with medications does not appear to be an obstacle in the early stages of the disease. However, participants with T2D gradually develop conflicting thoughts about adhering to medications after a few months of living with diabetes. One prime reason for this is their constant preoccupation with the side effects of medications. Consequently, many of these individuals tend to skip their medications when side effects arise without soliciting the advice of their GPs. These adverse reactions cause an aversion to medications to which T2D participants respond by first doubting the efficacy of T2D medications and then skipping their medications altogether.

“I have already taken my medications you know. But it still doesn’t go down [blood glucose levels]. That’s when I think to myself, how could this happen? That’s why I skip my medications sometimes.” (42, Male)

Our interviews brought to light several problem areas that appear to undermine optimal doctor-patient relationships during routine clinical consultations. Among others, participants with T2D often hesitate to consult GPs about any concerns about their disease out of the fear of being reprimanded. They are also reluctant to accept their GP’s decision to modify the dosage of their current medications. Participants with T2D interpret this as a deliberate attempt at prematurely increasing the dosage of their medications.

“They [individuals with T2D] are afraid to ask anything. The doctor might turn around and say ‘who is the doctor now?’. I have experienced that before. So they [individuals with T2D] don’t want to get hurt. And that’s the reason why don’t want to ask [questions].” (64, Female)

“What they [GP] recommend you take once a day has now become twice a day. From twice a day, it becomes thrice a day. So, that’s the problem. That’s why I dislike taking medicine. There’s no end to it.” (65, Male)

Worries.

Participants with T2D worry about developing T2D related complications (renal impairment, heart disease, and amputations) in the near future. Above all, they dread acquiring any form of kidney impairment as a result of their condition. They do not wish to lead a life fraught with complications as it considerably reduces their quality of life. The slightest deviation in their wellbeing (e.g., the presence of uncontrolled blood glucose levels) heightens the state of fear that they might succumb to complications. Hence, this behavior engenders a belief system where participants with T2D perceive that there is a significant risk of developing complications if they do not take medications as instructed by HCPs.

“I have to take my medications, I am worried that something would happen to me. I could get a stroke or they might amputate my leg. That’s what I am worried about” (75, Female)

Participants with T2D worry about immediate and long-term harm medications can apparently inflict on their body. A small proportion of these individuals feel uneasy about the idea of using insulin needles out of the fear of pain. Interestingly, a majority of T2D participants are apprehensive about “taking too much medication”. They believe consuming medications for an indefinite length of time could lead to permanent physical impairment.

“I have to take 7 pills in the morning, 7 in the afternoon and another 7 at night. That’s a total of 21 pills in a day. These pills can somehow ‘accumulate’ in your vital organs. It will eventually destroy your kidney and pancreas” (60, Male)

Stigma.

T2D participants often classify themselves as a “sick person” and feel embarrassed for having contracted the disease. A few of them think they will be “discriminated” if others discover that they have diabetes. Thus, many T2D people choose to keep their diagnosis confidential.

“You should see at their reaction and the look on their faces. They think I am going to die tomorrow. And that affects me a lot. I want to disclose my diagnosis sometimes. But I have already seen the double standards in the way they treat me previously.” (42, Female)

These negative perceptions strongly affect the emotions and behaviour of these individuals at many different levels. For example, they avoid being seen while taking medications. Similarly, insulin users in our study feel depressed and worry about what others might think now that they have commenced using injectables. Interviews with pharmacists and diabetes educators reveal that these emotions trigger a certain uneasiness injecting insulin in the presence of others. Therefore, many participants who are insulin users frequently excuse themselves (preferring privacy) when administering insulin.

“I prefer to do it in private when I am alone in my room. Usually, I will wake up in the morning, shower and then I will use the insulin pen to inject myself.”(61, Male)

Unwarranted optimism.

In the earlier stages of their disease, T2D participants hold a fervent belief that the disease can be cured and wonder why advancements in science have not brought about any permanent solution. In terms of dietary adherence, these individuals legitimize violations in food restrictions so long as they keep taking their medications in an orderly manner. They also downplay the seriousness of elevated blood glucose levels. This behaviour is further reinforced by the absence of any alarm symptoms after intentionally skipping their medications for several days.

“Because when I take my medications and inject insulin, I feel I am alright, therefore I can eat anything I want.” (48, Female)

“Doctors have warned me about the effects of high sugar levels in my body. But I didn’t take it too seriously initially. I only started worrying when I witnessed complications in other patients much later.” (28, Female)

“Sometimes, I don’t take my medication as suggested by the doctor. Because you see, when you have diabetes, you don’t feel anything even when if your sugar levels are elevated. You don’t feel a thing.” (60, Male)