Interview Questionnaire 2010 on Diabetes Experience - Research Paper Example

Interview Questionnaire 2010 on Diabetes Experience Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. “Diabetes is a life partner that restricts you in all spheres of life. Don’t do this, don’t eat this, don’t think this. I feel very restricted with this disease. In a word this is utter suffering.” “When I was 48.” Q2. How was your diabetes diagnosed? “My father was a diabetic, and the doctor told me to check up frequently. I was very worried since in my country I saw him suffering. In my 40s when I came here, it was very fine to start with. I gained a lot of weight in a short time. When I found that I am passing a lot of urine, I went to the doctor. I was 48 that time. They did blood test to find me to be a diabetic.” Q3. How has being diagnosed with diabetes affecting your physical health? Physical health I feel tired, cannot work or exercise much; feel hungry often. The doctor said I have high blood pressure, and I can see after a little walking I feel aches in my limb muscles. I feel this is a handicap. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I am worried too much and literally scared. The stories of friends and relatives always scare me. Sometimes, I feel helpless. Q4. What were the complications and side effects once diagnosed with diabetes? After being diagnosed with diabetes, I have gained massive weight. I have high blood pressure, and they say fats in my blood are very high. I feel very tired and sometimes I feel pins and needles in my finger tips. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. “Yes, but I cannot speak English very well. The doctor asked me about preferences in my food and about how much exercise I do. They suggested some food, but we do not eat these English foods.” Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? “Yes, they discussed about medicines and insulin shots. I did not like it, because it is horrifying to put a shot to my own body. Instead, they told me to take tablets, which I am taking now. They told me to stick to a diet with high fibres and vegetables and also told me to cut the carbs. But that is the main item in our food, so not much that I could do. They also told me to do some exercise, which I hardly get time for.” Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising (YES) 􀂆 Doing injections (YES) 􀂆 Testing glucose levels (YES) 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? “I don’t know how to read and put a shot to myself. The daily chores take so much of time that I cannot get time to exercise. Feel very fatigued.” Q9. Do you feel different than other people because of diabetes? “Yes, they can eat anything. They don’t have any disease. What is left for me is only restrictions with no benefits” Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? ‘‘I am worried all the time. And then the blood sugar goes up because of worrying, and the consequence is diabetes. They told me to lose weight. I failed. Then they realized, “it is my worry." "The quality of life has definitely changed, when you wake up in the middle of the night to pee, you don’t have a quality in anything." Q12. Discuss how diabetes impacting on your: Economic life “I cannot work as I would have been able to before I was unless. My income is definitely less.” Family life “When relatives come, and they cook many foods, I cannot eat. Moreover, my sex life is next to nothing.” Social life “I am afraid to go to my relative’s house. Everyone has a question. I want to forget these worries. I am a social recluse.” ________________________________________________________________ Patient 2 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. “My experience with diabetes is terrible. I am not well at all ever since I had been diagnosed with diabetes. It is an experience of intense suffering, where the people I bank upon for treatment have no clue what to do. Heart problem, high blood pressure, eye problem, and now insulin. Yes, I take Insulin.” “Now I am 55, when I was diagnosed I was 40.” Q2. How was your diabetes diagnosed? I was diagnosed accidentally, when my general physician was taking routine blood tests for a fever that was refusing to go. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health I was really shocked when my GP told me that I had diabetes. It has affected my physical health very much. I feel sleepy all the time, during day time, early in the night time, and repeated visit to the urinal is really a mess. I am definitely overweight now, feel thirsty all the time, almost am terrified all the time, afraid to go out. I cannot walk fast, heart problem. It is a great inconvenience. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I am still in a state of shock, and there is an ongoing worry about what will happen to me and my family. I heard from my doctor glucose control is a must, or else there are many complications which are not easy to treat. You won’t understand this unless you suffer, nobody understands. Ever since I have been diagnosed my sense of self has been pretty unsettled. Q4. What were the complications and side effects once diagnosed with diabetes? After the diagnosis, I developed high blood pressure; the doctors are having a hard time controlling both my sugars and blood lipids. They say these “bad cholesterols will choke my heart, unless I pay attention to diet and exercise. My eye sight is getting worse day by day. Once kidneys were very bad. Most important is blood sugar check and insulin, I don’t like sticking myself. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. Yes, when I went to the doctor after my recent illness with kidneys, the doctor told me that now is the time when I am supposed to take good care of myself. He explained the disease with patience and explained how I need to regularly do some exercise, check blood sugars at home regularly, regularly attend the clinic, and should never miss a dose of insulin. All fine, the good doctor did pay a lot of attention to me, asked about the food we have at home, and took my opinion as to how my treatment should be. But it is really very difficult to make anybody understand, how you feel. Sometimes, when you have diabetes, you feel embarrassed that you don’t accept all and sometimes even you don’t want to take anything. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? Yes. I could avoid insulin if would eat sensibly and they can manage me with pills. Also for this to work, I would need to measure my blood sugars very regularly. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections (yes) 􀂆 Testing glucose levels 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? This is very difficult. First you don’t remember, second you don’t feel like, third, who likes sticking own body. Sometimes, the costs also matter. Q9. Do you feel different than other people because of diabetes? Yes, of course. Outsiders who do not have diabetes would never understand your problems. Even your doctors would fail to feel your problems. Now I have ceased to tell people that I am diabetic. Most prominently I feel irritated, I guess I have a shorter fuse than other people, maybe due to the fact that in contrast to them I have lost my control over my own life. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? A man with high blood pressure, stress, anxiety, eye problems has enough on his plate to be unwell, and do you call this quality of life? I am even for small things under control of other people. I know these medicines are keeping me alive. Most of my day moves around the medicines, food, restrictions, and routine. This is not life. I am extremely unwell. I don’t visit a relative, don’t go to a club, cannot walk alone, have breathing trouble. My life is that of a convict, waiting for the next dose of insulin and the food. I don’t earn, no body waits me, I don’t work, and I am useless. Q12. Discuss how diabetes impacting on your: Economic life I have lost income; very difficult to manage cost of family and treatment. No leisure, no relaxation, and no fun. Family life I don’t contribute to the family; so my son is busy running the business we have. He has hardly any time to look after me. I wish I could help him. Actually, when you have something, only you have it. My family life is devastated. Social life I lead a socially isolated life. Nobody welcomes a diabetic. Patient 3 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. I consulted the doctor and preferred to start on diet alone. In few days, these were not enough anymore, and the doctor wanted to start me on metformin and Humajet insulin twice a day. Now I understand as I move on I am able to deal with my diabetes better. Yes I feel if it helps, it is okay to have an injection or two and lead a regulated life and when you do that I don’t think diabetes matters. I was 45 when I was diagnosed of having diabetes. Q2. How was your diabetes diagnosed? I was diagnosed to have diabetes at home, and you know what I diagnosed it. I knew what diabetes is from my wife’s disease. While caring for her at home, I came to know having diabetes is not a big deal. I decided to check my blood sugars when I started gaining weight, feeling fatigued, and feeling thirsty all the time. I checked my sugars in my wife’s machine and saw they were raised. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health This diagnosis of diabetes has changed my world. I cannot do those what I used to do, I cannot eat those what I used to eat. I have gained considerable weight. Tiredness and fatigue happens regularly. They say that I must have regular check of my feet and eyes, although really happened nothing so far. For me it is a part of life which I need to accept and change myself according to it. Thus far I don’t have blood pressure or other problems, but I know eventually these will come. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I have seen friends who have devastating feelings with their diabetes. I don’t feel fact that my wife has diabetes also. It is not undue to have worries about the disease, but sometimes, I feel lucky that we both have diabetes, and we can ask each other when we see that we have problems. Much of our worries and hopelessness get cut off looking out for each other. I think, I am supposed to feel bad about my diabetes, but I think rather than spending time worrying, people should spend time educating themselves about diabetes and life adjustments needed there, and that will keep you going. Q4. What were the complications and side effects once diagnosed with diabetes? I sometimes don’t feel any energy. Sometimes I just keep on sitting on the chair. Sometimes I don’t feel any urge to do anything. I guess this makes you lazy. As I know, it is very hard to do something when you have disease. The other thing is the blood glucose monitoring, its really painful; I feel it is more painful than the insulin injection. The other is food. It is so difficult to remember the food restrictions. Fortunately, my GP has arranged a regular check up of my blood pressure, heart, cholesterol, eye check-up, and foot checkups, and until this time, I don't see any big problem in these areas. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. I already told that one of the important needs at my level for smooth management of this problem is education. My GP does a good job in taking good care about me, but I feel even there my need for being educated about the disease is lacking there. Rather than simple advice of exercise, diet, medicines, and side effects of these medications, I often felt that most of these treatments are imposed on me. I could never really feel that I am a part of it. I also feel that I could do better in terms of food if my GP would involve me in the diet plan based on my choices. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? I take metformin and Humajet. The doctor is now telling about costlier medicines such as citagliptine. I must accept the fact that the doctor told about many other options, but I don't remember that all. What I gathered was that more than medicines, you need to change your life and the way you lead your life. You tend to gather fat, so burn the fat by doing some regular exercise. What they fail to understand is that in a family of many people, which is usual in our communities, it is difficult to have a special food for one or two people. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels (yes, but I feel there is no point in finding anything difficult, just accommodating would produce better results). 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? I don’t find it so difficult. It is painful. Moreover, sometimes I have noticed that the GP or the nurses don’t rely on my records. Whatever you do they will go with their own records. Sometimes, they won’t even ask you whether I have checked my blood sugars regularly. If it is of no use in my treatment, why should I bother to stick myself and cause pain and irritation? Q9. Do you feel different than other people because of diabetes? Even if you don't want, you are bound to feel different from other people around. Sometimes the profound lack of energy sets you apart. My wife tells me to move from the chair and go to our little garden and water the plants. I don't care about the flowers; I don't have the energy to do it. I just don't feel it inside my body. It is very hard to gather all the energy you have to do something. I feel I just don't have it anymore. I get very tired, and as opposed to other people in the family or the community, I have to rest a couple of times a day. I feel very tired and fatigued. Isn't it a difference from other people around? Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? One thing I understood when I started educating myself about diabetes is that you can never be the same again. I know today is always different from tomorrow, and it will be more always. It needs to be monitored. So you need to spend a lot of time thinking about your disease, monitoring, and how would you handle things if things go bad. The weight gain is bugging me; I have tried everything that I could, but all in vain. I cannot do any work and remain always alert so you don't develop any complications. With these, the sense of wellbeing goes for a toss, and if you don't feel well, the quality of your life is also no quality. I don't feel depressed though, but I must admit that sometimes all you think is that of death and a finish, rather than moving on. So much of regulation should not be meaning of any meaningful life. Q12. Discuss how diabetes impacting on your: Economic life Everything in diabetes is costly. Number one, your profession gets affected hugely that reduces your income. My job used to involve hard labour. That is nearing an end because I cannot perform any more. Using these drugs, continuously monitoring your blood sugars, all involve costs. Lest you develop a complication, you have to keep an eye on anything creeping coming in, your heart, foot, kidneys, heart, blood, nerves all. It pervades all. However, I have decided to keep hope intact until I am a broke. Family life Irritation and depression and a sense of hopelessness consume everything. My wife is also a diabetic, and a sexual feeling is also important binder in the family life. I think these would be troublesome in future. Children take care of us, but how long. It’s so very frustrating. Social life I see that I have a lot of troubles in the upcoming days, although I have decided not to lose hope. Increasingly I feel it would be difficult for a person with such a health condition to stay alive. Sometimes, I feel nothing. If you have a bad health, with pain in everyday life, you would like an end soon and become stoic about the surroundings. I think that kills the social life. I am not comfortable sharing my owes with anyone, may it be a friend or a relative. Patient 4 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. I was diagnosed to be a diabetic 3 years back. Since my diagnosis, I was put on metformin, and now I see that in contrast to my previous overweight, currently, I am losing weight. They added insulin to my treatment. Since then, I am kind of maintaining, but the doctors and nurses seem to be very unhappy about these, I mean how things are going with me. They say I need to measure my blood sugars at home; but it is so difficult to remember. Moreover, whenever you want to eat something, I have to remember to measure the sugar and adjust the dose of insulin, this itself is a funny idea. Now my sugars fluctuate a lot, I am scared about injecting insulin since my very low sugar and admission to a hospital last year. They really could not make me understand what I needed to do but were successful in scaring the life out of me. I am leading the life driven by fear and problems with blood pressure, cholesterol, injections of isophene insulin, a vision problem, and a surgery that is imminent. I was 43 when I was diagnosed with diabetes. Q2. How was your diabetes diagnosed? I had a flu, which turned out to be pneumonia. When I was admitted to the hospital, they found that I had blood sugar as well. They told my diabetes was the real cause of my lack of resistance to infections. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health They say that I have high chance of developing CVD, it is kind of heart problem from the high blood pressure and the cholesterol I have. The main problem with me is fluctuations of sugars which they tell me is due to my fault, since I cannot regulate. They keep changing my Insulin, and in this last three years insulin dose and types were very inconsistent. Management of my weight is another problem. Control on me and my health were just not possible. I have lost eye sight; fortunately, there are no kidney problems. These are so frustrating, sometimes, you lose all hopes and your wish to continue treatment proves useless. They say change your lifestyle, my point is if you don't have a life, where are the points of style or changes? How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health The point is I am never satisfied with the way things are with me. The diagnosis came as a shock, and everything that followed were against my wishes. I felt I was forced to accept all. Why can't there be some treatment that is easy? Injecting insulin and repeated sugar testing are both horrible ideas. To sum up, my attitudes, wishes, and needs in diabetes did never with those of my nurses and the doctors. Now, what I receive from them is scare, constantly that resulted in depression and anxiety in me. The doctor kept repeating the same comments, and I kept on feeling the mounting stress for my physical ailments obviously being incompletely treated by the doctors. The eye problem has restricted me to home, I cannot do anything on my own. You tell me who will be happy in this state of affairs? I am in dread and fear, and most of these fears come from my doctors. They say if I cannot control diabetes there will be more complications. Worry and anxiety and diabetes. If you think always you are going to die, it is anything but good mentally. Q4. What were the complications and side effects once diagnosed with diabetes? I have already told about them. High blood pressure, cholesterol, and eye problems. They say I have high chance of developing heart disease, which I fear is already there. I cannot control my weight. I agree, there is irregularity on my part. But that is not all. I am always afraid of sticking a needle in my body, and even if I manage it, the fear the dose may be too high to cause a hypo which would end me up in the hospital bed. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. I was never been involved in a care programme. In most cases, when I visit the doctors, the nurses would check blood sugars, ignore my records, and inform me how I am progressing towards death. Yes they say a healthy diet is necessary, but they never have time to ask me what are my preferences or what I can afford. They tell about exercises, but never did show me what I can do with my reduced eyesight. They just don't bother about you. They say reduce risks, and I am clueless about how to do it. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? If just saying is called discussion, yes they have discussed. But to say straight, I really understood nothing. They said about metformin and insulin. They told me about new drugs which can control sugars without any weight gain. They talked about diet to control my body fat and cholesterol, but they ask me to take food which I don't know or like. They talked about exercise, which I cannot do alone. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels 􀂆 I don’t find anything difficult 􀂆 Other, please specify: I find everything difficult Q8. Why do you find it so difficult? I don’t know what a healthy diet it; I have eye problems so I cannot exercise outdoors alone, there is no space indoors. Doing injections scares me since I may have a hypo and I fear I may end up in the hospital bed again. And testing glucose levels, I am not at all interested to do it. Q9. Do you feel different than other people because of diabetes? When I came to know my diagnosis first, I faced a very unpleasant truth that this is going to be a part of my life henceforth. I knew that I shall never be able to get rid of it. This itself sets you apart from the other healthy people you know. They don't need to worry about food, insulin injections, blood sugar check, or anxiety about what will happen. They don't need to choose a diet. They can visit a relative or a restaurant. Aren't these all differences? Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? My life has changed since my diabetes. I don’t expect anything good anymore. It I guess is no quality. I am consistently unwell, sitting or lying. I am entirely dependent on my family members for even my daily activities. In darkness I cannot visit the toilet alone. Physically I feel very fatigued and unwell. I guess sugar and cholesterol make this to you. Moreover, the scare to visit a doctor very regularly and the fear of landing on a hospital bed due to something else are no less. I have stopped working; my days pass at home thinking about my future and the other diseases yet to come. Even now, give me any stressful situations at home, my sugar levels shoot up, and then it will take many days for them to come back to normal. This is vicious cycle of very poor body and mind. Q12. Discuss how diabetes impacting on your: Economic life No income, dependent on family business, which I cannot control. Family life Family is tired of me and my problems. So no family life. Social life I don’t socialize much. I don’t discuss my disease with friends and relatives. We don’t talk about all these health problems with one another. Maybe the person who you are talking to, you know, doesn’t want to hear about it because it’s causing them to be miserable, more misery. But why would I want to discuss it? Why would you stress about it and talk about it? There’s no point. I am alone and socially isolated. Patient 5 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. I have to do my blood sugars at home. I have developed hypothyroid, high blood pressure, I have gained weight, and high cholesterol. Twice I became hypo because I could not adjust the dose of insulin. I don’t mind sticking myself as long as I am good, but one thing is sure the doctors and nurses don’t know how to treat diabetes really well. It may be due to the mood swings that I suffer from. When the sugars are high, I am down, feel weak and tired, when they are normal, it’s kind of okay. I was diagnosed first with diabetes when I was pregnant. This is about 14 years from now. Now I am 42, this means when I was 31, since then I am a diabetic. Q2. How was your diabetes diagnosed? I had really a bad time during my pregnancy; the nurses won’t give me anything to eat. I felt this awful since the baby I was carrying would have all his sugar from mine. As they said it, I was suffering from preeclampsia during my pregnancy due to this. I had high blood pressure since then. At the time of delivery, my eyes were very bad, and they decided to do a cesarean section. With a lot of hurdles I recovered in the ICU. Following this all my life until now is a see-saw. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health Physically, my health at best can be termed as poor. I am gaining weight, cannot manage my diet the way it is necessary. I feel tired always. The usual chores at home seem very hard now; I feel fatigued. I am fairly irritable; my son says I have a very short fuse. It seems this is due to my sugar and pressure. They give some medicines for my cholesterol, for last few months I am having pain while walking. The condition of one eye is bad, it seems it won’t recover any more. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I am mentally and emotionally mixed up a lot. The doctors say the more you worry, the more your sugars will be up. Once you get worried, you get bad to worse, ad then over time, you become stressed. It seems of late, my disease is from worry. It comes from worry. The doctor told me to lose weight, to change my diet, I tried all. Nothing helped; he later realized that it is my worry. Worry leads to blood pressure, I had already that. Then it is stress, you call that stress. Now I am stressed always. Now the stress is for not being able to control the things that I am supposed to control. Then you feel guilty, and its all down to me. I lost grip on myself, so I will have all those complications, my eyes and heart, and may be death. Q4. What were the complications and side effects once diagnosed with diabetes? My blood pressure, cholesterol, weight gain, and loss of eye sight are all I have other than the diabetes. It seems these are the complications. I am not sure, if you call the hypothyroid a complication. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. I wanted to take care of myself, and it would be good if I can make my own decisions. I go to my GP, but they may not know a lot about the disease and how to treat them. The nurses may know lesser. I mean as the specialists know. They don't ever discuss or involve me in my care. A nurse came home to show me how to make an insulin injection, but they are in such a hurry. They say don't walk barefoot, but doesn't tell why. Ask me to control diet, does not tell what to take. Whatever they say, we don’t take them at home. When my values are high, they hardly say for sure what I am to do to lower my values. They say how frequently I should check my values, but they don't understand what it takes to poke the self over and over again and how terrifying it is to become a hypo. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? Yes; the doctor told about new medicines, the names I forgot. But the stressed on the weight management and regular insulin and home blood sugar check up. They repeatedly told me about regularity on taking my pressure medicines and exercises, which I cannot do always. I feel so easily tired and exhausted. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet (YES) 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels (YES) 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? I don’t know which is a healthy diet, whatever they cook at home that I have to take. Testing glucose is like remembering every time you eat something. I hate sticking a needle in my body, and I don’t remember always. Q9. Do you feel different than other people because of diabetes? Yes for sure. I was a person who was like willing to get out there and do things, like others. This is it seems like others. Now I feel different from them. Now I fall back and let things happen on their own. This is for I don’t feel confident anymore. I had been of a type, like I used to grab people and talk to them. Now I lose words, like I am losing my memory. It feels so different. The silence is now greater. Unlike others, I feel, I am shaky, no confidence. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? My quality of life and well-being in one word is pathetic. I don’t go to a social gathering any more. I feel consistently being deprived of all things in life. I don’t go to any relative’s house in our community, and if I have to go at all, I cannot eat because I know if I eat I would eat more than usual. Sometimes you cannot avoid you know, when I get home, I am scared to measure my blood sugars, since I know, they will be high. If I eat too salty or sweet things, I get very thirsty, I get to pee more often, and my waist hurts. Sometimes, I bring home negative emotions and feel tired. I try to calm down and relax little by little. But hardly helps. I cannot help in household chores; I cannot get out alone. I could go to our shop earlier. Everything has changed. Q12. Discuss how diabetes impacting on your: Economic life Economically now I am totally dependent on my son; I don’t have any liberty to spend. They take care of my costs. This is really very restricting. Family life People in the household are tired of my illness, it seems I am never well. I don’t want to be a barrier in their lives. When relatives visit us, I just exchange pleasantries and then I am back to the corner where I belong. I feel sad and cannot just go along with the flow of life that the others are having. I see no point in marring their happiness with my own worries, stress, and mood swings. In a sense I am fighting my disease alone. Social life I miss the way socially I used to be before. I don’t have the confidence to mix with people in the community, since I often feel lack of confidence and overwhelming worry that prevents me to be easy enough to exchange with people in my society. Patient 6 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. Since I had been diagnosed with diabetes last year, I am able to control my levels of sugar reasonably within limits. I am controlling my diet, doing exercises, by they have put me on metformin. I am taking three a day. I don’t feel anything different otherwise, but I sometimes feel exhausted. With a little work, I feel breathlessness, and that scares me. When I check blood sugars at these times I find that sugars are high. This means whatever you do, sugars are difficult to control. I feel so depressed, and I wonder why it takes so much of effort to control sugars and what you want to achieve. Sometimes I wonder are these common symptoms suffered by all diabetics and what would they do when they face situations like mine. I was 48 when I was diagnosed with diabetes. Q2. How was your diabetes diagnosed? I am in a stable occupation, and I run my own business. One day I felt terrible headache, and long time before that I was experiencing neck pain and fatigue. I went to my GP, and he checked me to find that I had blood pressure. For some days, the treatment for blood pressure continued, but with no avail. After few days, my doctor advised blood tests, and to my worst surprise, it was discovered that I had blood sugars and high cholesterol. I was diagnosed with type 2 diabetes. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health Fortunately, it has not affected much. Yes, there is cholesterol and hypertension, but they are now responding to medicines. Rather being diagnosed with diabetes has helped me to lose the excess weight that I gathered before. I did not do any physical exercise earlier, now I am doing regular exercise. My diet is now very judicious and am kind of fond of it now a days. The sugars are very good, I test it regularly, and now consistently stay controlled at 6.8, and I am happy. The blood pressure and cholesterol are problems, but things look rosy now, and I will be able to manage it. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health To start with it was terrifying, but then I thought why should I stress myself for this? Yes, it is a swindle between hopelessness and aspirations. Sometimes when I do my exercises right, I eat right, and I test my sugars to get a great value that thrills me. So mentally I am good, and I really believe, its a problem of the lifestyle that I led before I had this. I have taken this regimen very seriously, and I feel there is no reason to get depressed, upset. I have heard from friends that if you have diabetes, you feel worried all the time, kind of mood gets very unpredictable, but may be I am just few days down the lane, so I don’t feel any. May be it will happen later on. Q4. What were the complications and side effects once diagnosed with diabetes? Just once I had a drop in my blood sugars, I felt very weak and tired. I took a chocolate immediately, and nothing much happened afterwards. My high blood pressure and cholesterol are fine now, and I think these are not complications of diabetes, these rather come along. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. My doctor is very good. At the time of my first diagnosis, he discussed with me in detail about the nature of diabetes. I had no problems understanding why diabetes occurs in some people. He explained to be what I needed to do and why that was so. He asked about my choices, my work schedule, what kind of food I liked, my leisure activities, whether I get a chance to do some exercises, and what kind of food I could afford. Then he disclosed to me my options and gave me gave me the freedom to choose. When I clearly chose the options and told him about my doubts whether they will work in reality or not, he went ahead to make some more alternatives, any of which I could use. This is specifically true for my diet, since in our families we use food which do not match with these Western diets that these doctors advice. However my doctor could understand my problems and knew about our culture and food habits, so he could suggest some that I could take up easily. He game me schedules for home testing and clues to adjust the diet as I pleased. He advised me cycling which worked well for me. Now I can manage most of my problems, and I am happy. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? Yes, as I have told earlier, the doctor told me about metformin, which I am taking now. They also warned me that eventually, I would need insulin. They told me about acarbose, citagliptin and other new drugs. However, I am now content that metformin is working just fine for me with my diet where I am very strict and exercise. I am determined that I won’t allow myself to gain weight anymore. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels 􀂆 I don’t find anything difficult (YES) 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? I feel what I need to do is for my health and wellbeing, not for others. So rather than fighting with it, thinking it to be difficult, welcoming these changes would serve me better. Q9. Do you feel different than other people because of diabetes? No, I feel I am as good as them. Rather leading a very regulated life with an entirely new lifestyle makes me feel good and better than them. I am unfortunate that I have diabetes, but the fact that I am motivated to control it with my own effort makes me feel secure and confident that one day I may have to stop metformin. My sugars are under control, if things go well I am positive that my high blood pressure and cholesterol will go down too. It may be a warning from nature, which others are yet to receive. I feel good that I started early. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? My quality of life has taken a turn towards the positive direction. Honestly, before having been detected to be a diabetic, I was really unwell, my blood pressure, cholesterol, sugars, although I did not know they were there, these were making me unwell, and my fatigue would prevent me to do any work, where hard effort was necessary. Now, since I had been diagnosed, I have made my lifestyles changed in such a manner and regulated all of my other habits so much that I don’t feel any effects of these problems. Specially after exercise, I feel so good, my ability to tolerate labour has increased so much that I don’t feel unwell and feel this is a good quality life. The only change that I see is that my life is very regular now. Q12. Discuss how diabetes impacting on your: Economic life No impact, all the same. I am doing my job very efficiently. Cist of treatment is nominal and that I can afford. Family life My family is very supportive, and there are no expressed and subtle problems. Regarding food, initially there were some problems, but everybody has started getting habituated to this diet of mine. Social life Yes, there is a little problem here. In our community social gatherings are food driven. We just love to have food together. I avoided social gatherings earlier. But when I discovered that these are making me alienated, I started attending these gatherings. I don’t feel embarrassed anymore if people ask me questions and I freely share my stories with them. However, I avoid food in these social situations. Patient 7 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. My diabetes was diagnosed when I was very overweight. Since diagnosis, all went upside down. I did never think very much about it, to start with I just developed a sweet tooth. Blood pressure refused to come down with the medicines that was having. Was feeling very very down, extreme fatigue, always thirsty, was visiting bathroom quite often, and there was a kind of uneasiness you know, which only a diabetic can understand. Sugars were very high, I thought may be the night before I ate a large ice-cream, two bananas, it’s kind of very high sugar food. I thought it might be that. Who knew that would be my last. Since then pills are friends. Last one year, things are really out of control, nothing is able to bring my sugars down. Few days back I had a chest pain, burning, just over the heart, they said bad cholesterols are high. Now they are saying I need to take insulin, so pills and pricks. I was diagnosed at 42, and now I am 52. Q2. How was your diabetes diagnosed? I attended a community screening camp where they told they would check out blood sugars to see if any of us has diabetes. Before this, those people did a door to door survey, and they said those who are over 40 should have a check up since they have higher chance specially if they are overweight. I did not have any symptoms to suggest any diabetes. When they said I had it, it was just a number, which did not make an awful lot of sense to me. They sais it should be between this and this, so if you are above it, I can understand you kind of have a problem and you have got to sort of control them. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health You know what, you got to have diabetes to know what it does to you. You got to remain in your toes lest something goes wrong. I am not well at all. I have heart disease; sugars are up and down and up. It’s so difficult to control. You got to remain scared always and watch what you eat always or where your feet are. I know when it goes low you should have something to it, but when it jumps up you are clueless why it went high or what you need to do to bring them back down. You stay and watch and try to regulate your food and things like that. When it comes to that you know you have to do because it's one of those things you have to do. I do it most of the time, but you feel hopeless when nothing works and whatever you do your sugars are high; it doesn't seem to have any impact on what I am doing daily anyway. I really watch what I eat, but you keep on listening that you are not doing enough to bring these numbers down. Well, you can stand as long as you can but then there is a time in the day I get, you can't go for ages without something to eat. I have to have some snack or something. You feel tired, exhausted, worried, hopeless, sleepless, all and that is what is, what you call physical health. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I had to change from the way I used to be before. It's a story of being distressed and depressed. I feel something had soaked up all my energies, I feel tired all the time. I set up the business here, now I can't do a thing. I can't go to any relative's house, and when they come to our house, the only thing they talk with me is my diabetes. I am feeling useless, can't even contribute to the family. I feel no interest in anything, it's like a big blow that has slowed me down and I am unfit and de-motivated. A lot of things I used to be doing; now I can't do, since it seems I have lost the drive to do these things anymore. Q4. What were the complications and side effects once diagnosed with diabetes? Once it has been diagnosed, the most important problem is fatigue, I don’t feel I have any energy anymore. I feel listless. I have tried to lose weight, but how much ever harder you try, you just fail, ever moth I see, I am gaining weight. There is a constant feeling that you are aware that you are suffering in your body, something everywhere is going wrong. You get to check your sugars, check your food, forget enjoying things which others do. You feel that it is easier to die with so many problems, living with this disease is so hard. In ten years, I have to cover my eyes with an eye pad, at nights constant burning, no medicines seem to help. I feel very weak at times, and sometimes things are worse so much I feel I have no power and I leave it to whatever way it may do. I feel sick and you know I should be dead anyway someday. I have no patience to come over my problems. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. When it was found in the first instance that I had diabetes, mine was 6 or 7, far less than that a relative, I took things seriously. My GP explained that people call it mild form of the actual thing. Now I see it wasn't mild, he was wrong, it was a type. He also explained that there were two ways of controlling it, either with tablets or diet, and they decided to go with diet that time with me and said I will have to be on check and if diet didn't work well obviously it's medication. That time I was quite confident that diet would work fine for me. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? Yes; he discussed insulin and diet. And some exercise. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels (Yes) 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? My eyes have problems, I can’t see well. My wife reads, and I know she does not read always accurately. Q9. Do you feel different than other people because of diabetes? Other people don't have problems. I have been picked up for this disease. Sometimes I think to the screening where they first detected my blood sugars. If it wasn’t for it wouldn't have been picked up when it was, in few years' time, seeing my condition now, I could be in some mess, it might be that it would have been far too late to anything then. The doctor said "You are fine, no problem, you have slight intolerance to glucose, no problem, you are like the man next door." This itself pointed at the difference and I understood I am no longer like others, it all depends on what the man next door is like, doesn't it? They are not scared of anything, I got to be scared from now on, and what I know I felt, it depends on what I eat and what I do that sort of thing. These are the things that affect and what if it would tip over one fine morning and what if the readings are high, high, and high. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? I am not healthy anymore, generally I am weak, tired, no energy. Its so stressful. I don't feel peace and comfort in my body, constant uneasiness. I can't expect anything out of my life anymore, I can't do what I want to do. No satisfaction and am constantly scared and being troubled by my numbers with the worry what these numbers would do to my body. I am pretty regular, never really been irregular, but this must of restriction leaves you nowhere and makes living difficult, it is not easy to measure always, whatever may it be, your sugars, actions, or diet. I feel angry, irritated, its unfair that I cannot work. I am now homebound, without work, and home feels like a hospital. When I see other people exercising, I feel very uneasy, I just look away to something else on the other side, and I understand I am no longer up to it. Q12. Discuss how diabetes impacting on your: Economic life We are middle class, have a small business. I can't contribute to the family income any long. Now, it's taking a toll on us. Although nobody complained, when medicines take up so much of money I feel very depressed. It's starting to bite. Family life We are joint family. I don't have any confidence on me, It's such a powerless and hopeless situation, so frustrating. Family doesn't like a frustrated guy. It's very stressful that I can't work right now. So many things, so many rules also let me feel very stressful, I feel it both in mind and body. This had made me miserable in the family, yes it different from that used to be. Social life I am sad and my mood is best called irritated, I guess from the stress in my mind, body, and family. With this you can guess how people in the society would receive you. I exist no longer in my society that used to be mine. Patient 8 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. Life had not been easy since my diagnosis of diabetes when I was hospitalized for my atrial fibrillation. I am now a diabetic. A patient. I am sick all the time, I am tired, don’t feel like I have anything to do other than taking care of myself. While others are partying, the beer, you know, I don’t have anything to do anymore with any of that. I had heart disease, I guess that has increased. I have no more energy to do such things. Like other diabetic patients, I too feel like sleeping all the time, so go to bed early, and I can't stay awake later than 10 pm at night. I have got to have my sleep. Now I am 43, and I was diagnosed when I was 40, its 3 years now. Q2. How was your diabetes diagnosed? I was admitted to the hospital with a heart disease, had pain in the chest. Had had nausea and was feeling breathless. They took me to the hospital. The doctor took my ECG and then told I needed to be admitted. It seemed I was having a problem of heart rhythm, and then they put me on some medicines. After about one month from when I was discharged from the hospital, when I went for a followup checkup, they also checked my blood sugars and told me that I had diabetes. Then they changed the medicines they gave earlier for my heart condition, saying that that could have also caused my diabetes. The medicine was stopped, but the diabetes stayed back. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health Heart disease was there from the very start. But with this diabetes, I get very tired. I have to rest a couple of times a day. It was really very bad when I was released from the hospital, and I was feeling too tired to do anything. Now I know that this was part of the diabetes problem. I take a nap now for an hour in the morning and an hour after lunch, its very important for me to function and survive. The only problem, I get tired too quickly and become very fatigued. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I live in a state of fear, humiliation, loneliness and shame. I feel nothing though, not good, not bad. Nothing, now I wait to die. Not only me, many people who are so sick daily, have pain. They are like me, like to die. If you don't have health, everyday pain, your life is not sweet, it's bitter. Wheelchair, nursing home, and sickness, that's all I can see in the future. What is future going to be with so many troubles? With such a health condition, it is difficult to stay alive. Q4. What were the complications and side effects once diagnosed with diabetes? The main complication is that the sugars do not go down. My heart disease had been there long back, so I don't blame it to my diabetes. I am doing what I was told to do, but my sugars don't still go down. It seems they or I just don't know what I am doing wrong. I diet but it does not make any difference. Sometimes though I feel good, but that's very rare. These are the times when my diabetes is under control, I feel really good and I have a lot of energy. I want to walk around. When the sugars are high, I feel dizzy, I feel like I have no strength. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. They just say you have got diabetes, take these tablets, that's it. I want to talk to my doctor, but does he have time? My doctor got me to buy one of those things that you stick on your finger and do the test yourself, but he hasn't had time to talk me into it yet. I am not sure I can do it, so I feel why stick myself when I feel my condition is not that bad enough that I have to do that. So he doesn't tell me what to do. I tell him the tablets are giving me headache, so can I cut it. He is so busy you can't talk to him. My headaches were bad, so I start to tell him about the one giving me problems, so he needs to fix it. He asks me "which one is that?" I don't feel I can tell him. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? Nobody told me anything because I know. I know enough about me, what is good and what is bad. Plus they always tell about diet and things not to do. I know pretty well now what they are going to tell me. Why to use my and their time? Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels (YES) 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? It is sore (shows the finger), I didn't like it. And then I kept thinking, well i am filling this diary with my results, but nobody ever looks at it. When I go to the doctor, they will do blood test on their own and then they will decide what could be good on their tests. It looks like I am causing the pain for nothing. Q9. Do you feel different than other people because of diabetes? Have you ever heard of a normal guy whose life is dictated by numbers. I am not sure when the sugars are too high or too low. I don't check it, I am fed up. Most days after lunch in work, it becomes impossible for me to keep myself awake. It's so very troublesome. I feel the urge to go and lie on the bed and feel like I might need the sleep for an hour. I have heard of it, this could be caused by being a diabetic. Other people are not like that, I am sure from what I see around. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? Our culture is that of food, eating more. When I visit relative's house, when we ate, I was given extra tableware, and the parents told their children that I had diabetes. In some cases people think diabetes is contagious, it will contaminate others. People see us, diabetics as inferior people, which make me shameful. So what remains is eating alone and suffering alone. If you think this is quality life, so be it. Sometimes you don't have the confidence to drive again. Sometimes you just don't know what to do at first when you come home. I have lost 15 kg weight in last three months, and even then a diet biscuit at lunch keeps your hungry but your blood sugars sore high. So instead of food I get a tablet. This is what is my life now. Q12. Discuss how diabetes impacting on your: Economic life My income is low. Diabetes has added burden to it. If I don't feel bad, I see no reason to go to the doctor, since it needs money. For me alone, the family can't have different food. The doctors say I need the change the way I live in, what they fail to understand is changing the way to live in costs money, and with this disease, I can't afford much. Family life There is constant unhappiness in the family, since I cannot work as much as I did earlier. Since everyone in the family has to work, there is no one to talk to. Plus the fatigue and weakness, they blot all energy to stay in touch with the family. Social life I told about the social life, I don’t go anywhere, I don’t mix with friends or relatives, this is only me and my diabetes. Patient 9 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. You live, breathe, and suffer diabetes, the moment you are told that you are a diabetic. Seeing how different I am now from the old world that I had been, I see that I have a glorious entry into a group of new class of people. I am able to manage my diet and sugars pretty well, but I am hardly able to manage my fear. I am really worried about the possible complications, as the doctor said, many are fatal. Sometimes, its crippling you know, I feel something is happening behind my back, and suddenly I will end up with heart disease or something more critical in the hospital and never would return home. I am 38, and having the disease at such an young age, I am really too scared to think. My mom died out of diabetes and my time may soon come. I have started to think about death a lot. I was 37 when I was diagnosed with diabetes. Q2. How was your diabetes diagnosed? When I was in work, due to religious reasons, I was fasting. This day was kind of different, I was not feeling quite easy. Suddenly I started feeling chills, and everything around was moving, it became kind of dark. The next thing I remember that I was in the hospital bed, they said I passed out at work and then they brought me to the hospital. Here the doctors did all kinds of test and said I had high blood pressure and actually I had diabetes. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health Leaving aside the threat the diabetes pose on your life, the major physical ailment that I have is overwhelming fatigue, tiredness, and lack of energy. Nevertheless, I feel very thirsty always. I feel so tired that I sleep through and like to sleep through most days. I was a physically active woman and when it came through I didn't like it. I was going from a doctor to another to find out what was my problem, long before then really could diagnose that my sugars are high. I was so upset, you know, I could not talk for a while. And it literally floored me. Terror and fatigue made a diverse combination, I was asleep day and night 9 months, and I was too tired to take anything more. These all affect your body, a kind of pain, uneasiness, tiredness, and irritation. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health With this overwhelming tiredness which they said for 9 months is actually in my head, there was depression when I was informed about my diagnosis. I had itching all over my body and was crying alone almost all the time. I am now so frightened about my disease and the treatment that whenever I had a chance to attend these group discussions with the diabetics, I would attend them and would learn from the experiences of other people. I am so unconfident now. You see as a person you change dramatically when they give a stamp of diabetes. The stress is not just tolerable, you will have to be constantly watching all things in your life, naggingly requestioning until you are fed up. Whenever you come across a food you have a surge of doubtfulness, should I eat it or not? And then you turn rebellious, why can't I have that bit of chocolate and unknowingly you enter into a phase of ups and downs, I mean, emotionally; perfect emotional and mental ill health. Q4. What were the complications and side effects once diagnosed with diabetes? The tiredness is the main complication of my diabetes. Moreover, I have gained a lot of weight. The doctor said I don’t have much other problems, but I feel the fatigue and exhaustion is so much that, I feel diabetes has slowed me down and has soaked up all my drives. I don’t feel fit or in condition. All these, kind of join together to wipe off motivation to do anything. I feel sick, as of something very big is happening inside without my knowledge, and I know I will turn out to be a patient. All these have increased my distress and make me really very sad, mostly I feel the intensity of these things when I am alone. I worry about my tiredness, and it makes me more tired, only sleep can improve that, but only momentarily. This makes me more sad and I worry more. It is going on for a long time, and I feel if I didn't have diabetes, it would just make me happier. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. They may say it, but I don't agree that they bother about involving us in planning our care. There should be someone who sits down and talks to you. Somebody should explain in my language what I shouldn't do, but there is no one from our community there. So it is very difficult to understand how things should be. They do tell us to make changes in the diet, but they assume that we know all, but the kind of foods that we eat and the kind of advice that they give makes a big difference you know. In most cases, they are clueless why despite doing everything, my weight is increasing or my sugars are not going down. It becomes more difficult when they say they have no time, what they fail to understand is that if they have no time, we have only God to take care of us, who is not always available for people like us. Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? Diet, exercise, and medicine are main; they have put me on metformin. At first always I used to forget my tablets, now I can remember. When I talked about some alternative treatments, the doctor said there is no other way than these. He told me about taking insulin, he put me on this for some days too. I remembered to inject insulin in the mornings, but things used to go busy at night, and I forgot to do it. So they went back to the old. Now they are talking about some new costly drugs. I would like to give a try to it since you know I loved different food, and I would love to have the food I love more often. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet(YES) 􀂆 Exercising 􀂆 Doing injections 􀂆 Testing glucose levels 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? I love noodles, but now I will have to have rice. It is just a killer. Funny enough, sticking strictly to this diet did not yield much, control over my blood sugars appears impossible. I enjoyed eating, now that I have diabetes, I have to control everything, but what's the use. Now I eat three bowls of rice with every meal, and it seems what I am eating is changing into sugar. Craving, greed, and no satisfaction, these lead to really very negative emotions. Q9. Do you feel different than other people because of diabetes? The thing that sets you apart from the nondiabetics is the regular feeling of sadness and suffering, with these you cannot feel like others. These come in surges, last for weeks but mend themselves. I have lost my sense of achievement and competence. I feel I cannot do things on my own, and I have lost my independence that others are having. These will make you weak, powerless, and you will be isolated from others who are so different from you. Unlike others, I don't have confidence like them. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? Yeah, my life has changed after they diagnosed me with diabetes. They says if I want to win over diabetes, I need to have exercise, control over ehat I eat, repeated testing, and taking my medicines quite a few times a day. I have changed a lot over these years, but is that a change towards better quality? I don't think so. And I am upset about these changes. And my quality of life is so bad that I have lost any motivation to strictly follow the doctors in these matters. This is due to the fact that I am doing what I am being told, but I hardly see any difference. This makes me frustrated. And the effect on my body, I can sense sugars are very high, I have no strength, I feel dizzy, it doesn't allow you to concentrate on anything other than your body. I can't go to work, and sometimes, the first thing I need is some food, then only I can think, talk, or function. Thus you see these are forcing me to accept few things about me and my life to just remain well, and this is not wellbeing, and I have learned to live with the disease. I am now habituated to consider it as a part of my life, and don't you think this is an important change, although one part of my mind says being so uptight is of no use. I have already had the disease, I am trying, there is no point in living the life more happily. No point in ruining the day with these negative thoughts. Q12. Discuss how diabetes impacting on your: Economic life I am about to be a broke now. I was planning to have a renovation of my house, I dropped the idea. I am somehow managing my costs with the job I hold, but my contribution to the family costs has drastically reduced with the increasing cost on my treatment and other related things, but I don’t think on these much Family life Family life cannot be unaffected with such a disease. If I don't understand what would be good for me or my health, how could the family know what is good for me. Although my family supports me a lot, they remind me about my medicines or what i am supposed to do when I forget it, there is a limit to all these. However, my family life has not be affected much, and I think they support me to manage my treatment since they wish my life gets balanced. Social life It demands a social adjustment. I know diabetes will never leave me alone, and its a lifelong disease. But know the social life is greatly affected by people, they don't ever allow you to forget about your disease. To start with attending social gatherings was an embarrassment, and as time went by, I have become immune to it. If people ask me now, I am quite comfortable with it. Now I see that sharing things about self to the people made sense since only through this I get to know other people's experiences, and it eases your mind a lot. Patient 10 Q1. Please tell us your experience of diabetes. How old were you when you were diagnosed with diabetes. I get very tired. I have to have a rest a couple of times a day. I guess it is part of the diabetes problem. I have to have rest an hour in the morning and an hour after lunch. I think I will be able to survive. It’s okay to have diabetes, not a big deal. I have no other problem, the only problem is I get tired, very fatigued and frustrated. I was diagnosed when I was 48. Q2. How was your diabetes diagnosed? My hypertension was diagnosed by my GP. He gave me medicines. These were working fine, but in one fine morning I found that my tiredness is too much. I was not even willing to get out of bed. When I reported to my GP that evening, he suggested tests and found that I have high blood sugars, and that’s it. Q3. How has being diagnosed with diabetes affecting your physical health? Physical health I am weak, tired, gained a lot of weight, have high blood pressures. My cholesterols are borderline, may be in the wring range quite fast. How has being diagnosed with diabetes affecting your emotional/mental health? Emotional/mental health I keep on crying, feel sad, depressed, and why I don’t know. I don’t feel any zeal any more, I guess this is normal with diabetes. Q4. What were the complications and side effects once diagnosed with diabetes? I have gained a lot of weight, my sugars change very fast and they are difficult to control, and my mind, lots of things are not okay. Q5. Have you been involved in designing a treatment or care plan for managing your diabetes. Please describe. Never, they ask us to record sugars at home, but they don’t even see them ever. Involvement in care plan needs talking to the patient, do they have time? Q6. Have your diabetes medical advisors discussed any treatment options with you? If so, what were these alternative treatments? None so ever. Q7. What do you find most difficult about your diabetes? 􀂆 Healthy diet 􀂆 Exercising 􀂆 Doing injections (YES) 􀂆 Testing glucose levels 􀂆 I don’t find anything difficult 􀂆 Other, please specify ______________ Q8. Why do you find it so difficult? I forget. Q9. Do you feel different than other people because of diabetes? No use asking this question (irritated). Diabetes grasps your life and forces you off your course. Even if I don’t feel, other people who don’t have feel me different from them, and that is enough. Q11. How has diabetes had an impact on your quality of life and well-being? How has your life changed since being diagnosed with diabetes? I don’t feel well. If I am always tired and fatigued and cannot do my work and if it changes my life for ever leaning towards the negative, I don’t have any quality of life. My life now revolves around thoughts about food, diet, terrible complications of diabetes and getting depressed or worries and then coming out gradually of it, its a big change from what I had been before. Q12. Discuss how diabetes impacting on your: Economic life No impact. Family life I have a very supportive family. Social life This disease has affected my confidence and performance. I have ceased to go to social gatherings mainly I tend to conceal my disease and in our culture, forcing food in social gatherings is a norm. I want to avoid it. Sometimes I eat in front of them, but later go to the wash room to vomit it out. End of first half: These need real interviews and transcripts, huge time, money, labor is involved. 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