Experiencing symptoms of discomfort.

Participants expressed their physiological discomfort from a broad range of symptoms, namely thirst, frequent urination, abnormal sweating, lethargy and fatigue. For instance:

“I was feeling tired, lazy, dizzy and thirsty all the time…I did not feel comfortable, I felt there was something wrong, but I was not sure if it was signs of diabetes.” (A: 7)

Although the vast majority of participants had family history of type 2 diabetes, a finding commensurate with the literature, most were largely unaware of the symptoms and their relevance to the condition [13,14]. Diabetes appeared to be a common differential, on the basis of their family history, but the symptoms were frequently attributed to another cause. For example,

“I thought they were normal symptoms that may happen to anyone. I did not know they are symptoms of diabetes” (B: 6)

Experiencing organ complications.

Some participants suffered organ impairment and dysfunction as either a microvascular or macrovascular complication of diabetes [2]. For example,

“I had late stage of renal failure due to diabetes.” (A: 2)

Some of the participants suffered complications such as cardiovascular disease, renal failure and visual problems without an awareness of their connection to type 2 diabetes.

“I did not know that I have diabetes till I discover that I have kidney failure and vision impairment.” (B: 9)

Following the onset of symptoms and their progression, participants began seeking information and medical advice to explain the reasoning; this was commonly aimed towards families and friends. Others consulted medical services, used routine medical testing, and public awareness campaigns pertaining to diabetes and glycemic control. The time between the patients’ first suspecting abnormal symptoms, to contacting a healthcare progressional varied widely, from a few weeks to several years.

“There was a diabetes awareness campaign arranged in one of the malls. I did the test there and discovered that my glucose level was high. I did not believe it in the beginning, and it took me a while to decide to visit a doctor.” (B: 4)

Feelings and reactions to the diagnosis.

The majority of participants could accurately recall the moment of their diagnosis, and associated this with powerful reactions from denial, anger, shock, and depression. Some of these emotions influenced adherence to pharmacological management:

“Since that time I have not taken any medicine. Only after 10 years, I started to take medicine.” (A: 2)

Perceptions of diabetes.

Participants’ views about their state of health were foundational to the narratives they constructed about their condition. These narratives affected the diagnostic acceptance and their approach to management. Some were relieved that the diagnosis was only diabetes, as it excluded more life-threatening diseases. However, these participants appeared to diminish the health implications of diabetes, given its prevalence within their families, and across Kuwait. This comparative weighing of the relative burden of chronic conditions was illustrated as follows:

“Having diabetes is better than having other more serious diseases like cancer” (A: 4)

Conversely, the diagnosis also raised concern for many.

“Diabetes is a nightmare for me. It is even worse than cancer. Once you have diabetes, it starts slowly damaging your arteries, veins and muscles and then attacks all organs” (A: 2)

Accepting the condition.

Most patients eventually accept the condition, identified diabetes as a long-term chronic condition and perceived it as an inevitability. Many relied on religious beliefs to help with their acceptance of the condition, attributing its presence to fate and God.

“Illness is something destined by God, so I must accept it.” (B: 5)

There was a reconciliation for some patients transitioning from resentment to acceptance, thoroughly embracing self-management.

“Now, I have begun to adhere to a healthy diet and I believe that diabetes is a chronic illness that won’t fade away. Therefore, I should prevent more complications through adherence to a healthy diet and taking medications on time. I am keen to know things that can prevent.” (B: 4)

Changing self-identity.

Some participants attributed their diagnosis towards forging a new identity or changing their self-identity. For example, one participant expressed feeling different from others as a result of their condition:

“When I was initially diagnosed with diabetes, it was an obstacle in my life, especially when I have to travel. Nobody can afford traveling with a person who is diabetic because of the many times I have to go to the toilet. I feel I am not a normal person anymore – I am different from others. So, I have to consider all these things and take cautions when I travel with anyone. I had to learn what things I have to do when I travel as a diabetic person.” (B: 11)

A shift in identity from an independent person to someone dependent on others was noted for. Some described their struggle with their new identity and recognised the need for adaption to their new lifestyle necessary to manage the disease. For instance,

“The new situation is very difficult for me, you cannot consume calories as a normal person would. I must calculate the carbs for everything I eat.” (B: 15)

Reconstructing lifestyle.

After accepting the diagnosis, many proactively constructed plans and began making decisions for an enhanced lifestyle, including timely pharmacological adherence, regular glycaemic monitoring, purchasing glucose monitoring devices, calculating nutritional intake, and engaging in exercise.

“Once I woke up to my new reality, I decided to prevent more complications through adherence to a healthy diet and taking medications on time.” (B: 4)

“After I had been diagnosed with a diabetes, I convinced myself that I have to stick to a strict diet.” (A: 1)

Spiritual coping strategies.

As seen in the acceptance phase, religious and spiritual beliefs were identified as important factors in navigating participants through their transitional journey. Religious beliefs and rituals were used as informational sources to assist with the adoption of management strategies:

“I don’t know how I can describe my life to you. It is a miserable life, but we have to be thankful to God for everything He gives. I always pray and have only faith in God, this is how I am surviving.” (A: 2)

Religion was also a source of justification and rationale, explaining the disease as an inevitability destined by God:

“I also understood my situation and realised that it is a plague from God. Illness is something destined by God, so I must accept it.” (B: 5)

Finding positive support.

Support from family, friends and professionals was noted for all participants. The nature of support seeking practices varied, from relatively functional requests (e.g., purchasing equipment to enable optimal glycemic control) to seeking emotional support. The analysis found that the social role of family and friends was critical in diabetic care, enabling assistance early in the disease course, for instance:

“If I feel that I am upset, I try to go outside with family and friends and have fun and avoid anything that makes me upset. I learned how to overcome and manage my disease by gathering with other people and talking to them.” (A: 3)

Where family and friends were enlisted for support, patients with diabetes felt it was important for them to bring forward a positive outlook. Patients actively avoided people with negative influences

“People who have diabetes should not talk with other people who are negative but talk with positive people; negative people could depress them even more. I try to sit with people who are funny and make my life more interesting and fun and who can give me hope in my life.” (A: 3)

Avoidance.

The majority of patients used a constructive mindset to confront the condition, however some used avoidance as a tool to disengage with, or evade the need to manage the disease. This was either behavioural avoidance (i.e., failing to test blood glucose regularly or not adhering to a nutritional care plan) or cognitive avoidance (i.e., avoiding information). There was a meaningful correlation between coping through avoidance and the desire for co-existing with the condition peacefully. For example, one participant used behavioural avoidance to avoid further worry:

“I have more than one glucose testing meters in my house and my daughter keeps buying me the test stripes, but I would never use them. I don’t like to use them. Because if I discover that my blood sugar level is high, I would start to become tense and worried.” (A: 4)

Avoiding information related to diabetes was an example of cognitive avoidance exercised by some participants as they found that such information increased their stress levels. One participant explained that when reading about her sister’s illness, she became overwhelmed and depressed:

“I do not like to search for information. This is because I had a bad experience when my sister was diagnosed with blood cancer and I started searching and reading about the disease. I became depressed and kind of frustrated with the information I read. I felt that she would not be able to recover from the disease. The information was embedded in my mind and gave me an impression that the cancer would spread quickly in her body and she will die…We kept reading as we were uncertain and worried, but it made our lives difficult. That’s why, when I was diagnosed with diabetes, I did not seek information from the internet or by searching through Google; I know that the more I dig into reading about it, the more I will be overwhelmed and depressed. I like things to be kept hidden from me, so I can live peacefully.” (B: 10)

Confronting and seeking solutions.

Soon after their diagnosis, patients sought strategies to confront and mange the condition, through adherence to management strategies and optimising disease control. For example,

“I try to take my meals in a timely manner and I do not delay it as much as possible. I also try to reduce the carbohydrates in meals.” (B: 5)

Almost all participants mentioned their commitment to self-care management. Comparative analysis showed that some participants relied on biomedical management before switching to, or combining with traditional medicine approaches. However, patients soon acquired a strong opinion on whether those approaches were likely to yield dividends for their diabetes control. The rationale for searching for, and the subsequent use of alternative medicines was the hope to be cured as noted by healthcare providers. The behaviours around traditional medicines are illustrated below:

“I take some Murah (a particular herb), which I always keep with me in order to reduce high sugar levels.” (B: 11)

“I tried taking Cinnamon but to no effect!” (B: 14)

“We constantly reflect on why patients seek medication through herbs and alternative treatments? It seems that patients do this in the hope that it will cure them from diabetes.” (B: 19).

Distraction.

While some attempted to confront the condition constructively, others applied distraction techniques by engaging in alternative activities, or completely avoiding situations that may incur stress (e.g., engaging with hobbies, gathering with others, and not worrying about the condition). Some participants stated that this provided relief and prevented their blood glucose levels elevating:

“What I do is just rest and try not to think or get worried about it because, if I start thinking, my blood sugar will rise higher.” (A: 4)

Others explained that they aim to avoiding thinking and worrying about the condition excessively. This helped control their diabetes, adapt to life with it, and co-exist with the disease:

“I try as much as possible not to feel concerned about it so I can coexist with it and to stop it from taking hold of me…because I do not take diabetes seriously, it helped me adapt and coexist with the disease.” (B: 8)

Assisting and hindering self-care.

This focused code was constructed when the participants shared experiences of the role of different factors on the degree of assistance and hindrance on patients’ self-care management, including social and culture, environmental, management and clinical factors.

Family and social support was important in assisting patients’ self-care management from the provision of information, food recipes, and assistance in the use of technology (e.g., medicine alarms applications).

“I am illiterate. I don’t know how to read. However, I get the information I need from my children and other people around me. My children are educated. My daughter is a teacher, the other daughter is a secretary and my son is an engineer” (B: 5)

Boredom.

This category developed when the participants shared their experiences of becoming bored over time with their daily self-care management routine. For example,

“I do not follow up my appointments regularly. The point is that this matter has become a boring routine; tedious and unchangeable. Even the follow-ups at the clinic are the same and nothing new happens except the dispensing of medicine. Nobody tells you anything in the clinic.” (A: 4)

The significance of boredom as a transitional phase was that some decided not to commit to management strategies as stringently, particularly adherence to nutritional programme and medication, and returned to previous habits, with waning interest in learning about their disease. Consequently, these patients relapsed:

“I haven’t been okay recently since I was uncommitted to the medication due to my life tensions and pressures. I felt that people around me did not accept the idea that I was sick. I didn’t feel like taking the diabetes medicine and I was stubborn about taking the medicine. I don’t know why it has become a tiring course of treatment and I feel as if it is useless.” (B: 8)

Healthcare professionals were also able to verify this as a hallmark feature of the diabetes self-care journey:

“At the beginning, especially in those patients who recently got diabetes, they demonstrate enthusiastic behaviour which is reflected in their regular monitoring their glucose levels. However, after that, it turns into boring routine for them, then their enthusiasm gradually fades and they become careless, particularly when they perceive that their disease is chronic and inherent. Most of the careless patients are those who are diabetic for more than five years.” (B: 17)

Surrendering.

Surrendering was mentioned in the context of protracted negative experiences with diabetes, such as feeling controlled by the disease, one even described it as living with an enemy:

“It is diabetes that controls me – not the opposite. It is like living with your enemy, even if you hate it you have to live with it peacefully.” (A4)

Some participants surrendered to the disease once they believed they had exercised most avenues to manage their illness could not find ways to make themselves feel better.

Fitting self-management into daily life.

This focused code harnessed the participants’ narratives around fitting and adapting self-care management into their lifestyle. Once a person has been diagnosed with diabetes, their life goes on, and they attempt to ‘fit’ their daily self-care management routine into their lives. Many devised novel methods to adapt to the new lifestyle, for example:

“I try as much as possible to adapt the daily routine to my daily life…I have become more punctual as I set the alarm to the injection schedules so that I should not forget it. I tried to adapt myself to my disease…Since I was diagnosed with type 2 diabetes, I felt scared and I started to walk half an hour every morning – as well as in the afternoon. In the morning time I make it as part of my daily routine as I walk to work from the parking area to the workplace.” (B: 5)

Adjusting to a new situation.

This reflective code was mentioned by participants while sharing thoughts and feeling about their adjustments to effectively adapt to a new biomedical situation (i.e., avoiding gatherings, reducing dietary fats, and ensuring that the timing of activities did not disrupt their medication and nutritional regimen). Frequently, a long period of trying different strategies and seeking various sources of information to gain the skills necessary for their self-care management was employed.

“I used to take care of my mum. This experience helped me to know more about the disease…I don’t like reading. So, I have not read about diabetes, but I prefer taking information from other diabetic patients…I believe that if I seek more information about diabetes I become more worried about the symptoms I have, so I prefer to avoid seeking information about diabetes…I look after myself and my health and control my eating habits…I managed to control my diet by not eating sweets and eating less fruit…I adjusted with the new situation and became my own nurse.” (B: 14)

Integrating with the disease.

In addition to finding time to fit self-management into daily life, the overarching objective was to integrate more coherently with the disease:

“I have to carry on with life. Diabetes become part of me and I have to learn how to manage it, so I can coexist with it peacefully.” (B: 9)

When participants accepted that diabetes management required a symbiotic integration with their current lifestyle and routine, they were able live and co-exist with the condition peacefully:

“I am learning to control and mange my disease. I always wanted to know everything about it. The information I gathered helped me to learn and manage my disease and integrate with the person who I am now. I do not feel worry anymore as I try to read and understand my illness and learn how to live peacefully with it.” (B: 5)

Balancing.

Some participants mentioned strategies that have helped balance their needs with their daily self-care management:

“My diet has come under the supervision of the dietician. I have become more committed. However, I don’t deprive myself of my favourite food, but take it in moderate amounts.” (B: 3)

On the other hand, some experienced difficulty in adapting to the self-care management process to live a normal life and balancing their needs. Therefore, regarded themselves as ‘becoming abnormal’ or ‘different from others’. Many participants felt they had lost the joy of everyday life:

“I feel I am not a normal person anymore – I am different from others. I cannot travel like before; or I have to consider all these things and take cautions when I travel with anyone.” (B: 2)

Co-existence.

This focused code was consistently referred by the participants throughout the interviews. For most of the participants ‘co-existing’ was a consequence of them accepting the diagnosis, adapting and living with the disease. Co-existing was defined differently among participants, as acceptance, reconciling with the disease, or aiming not to surrender to it. Although some had setbacks to managing their condition due to particular circumstances, such as social engagements or a lack of social support, after time they were able to galvanise themselves and realise their need to progress and work constructively in the self-care process:

“Coexistence is accepting the fact of being diseased as being destined by God while not surrendering oneself to the disease. For me, coexistence is to learn to accept and live side by side with the disease and build a relationship with it.” (B: 13)

“Coexisting means facing the disease and accepting it. I was unwilling to accept it at the beginning for a while that is because I couldn’t imagine how I would take medication on a daily basis.” (B: 8)