Life Happens : Living a Healthy Life despite a Chronic Illness


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Living a Healthy Life with Chronic Pain

Such mechanisms surpass the daily routine of people who, like Mr. Pedro, try to survive the many impositions and determinations the disease forces upon them, which are in turn reinforced by the prescriptive and mandatory actions of healthcare professionals who do not understand the difficulties and challenges patients face.

Such challenges are intensified when the patients experience the phases in which the disease becomes more acute, causing a constant state of attention and stress. This is the daily life, in which the ways of living are based, supported by the feeling of ambiguity; and where one feels the limits and mortality. This life is stressed by a willingness to live and the need to enjoying the here and now, capable of transgressing healthcare professionals' orders as a way of living this moment 6.

Therefore, the way in which each person experiences his or her process of falling ill is unique and deeply personal 7. The disease is part of Pedro's life. Hence, there is no way of providing care to his real needs without understanding the context of his life, as well as the many other repercussions of diabetes mellitus in his daily life, which is obstructed by financial and personal problems, among others. Exhaustive reading of his narrative revealed that his daily routine is obstructed by the disease, especially by the daily small deaths represented by countless daily losses 6 in relation to his previous way of living.

The disease was discovered over 15 years ago, when his body had no signs or symptoms of diabetes mellitus, and his life had fewer limitations and restrictions. As Pedro started to experience the manifestations of the disease more intensely, it became the center of his existence. Until I get better again, how am I going to carry weight? If I do, my legs will swell again saddened tone.

From that moment on, Pedro took on new rules for his life 8 , making the choices that were possible due to how he perceived the manifestation of the disease in his body, resulting in the limitations and restrictions of his daily activities. Besides, self-esteem is lowered in this process, especially due to the difficulties to provide for his own sustenance. Therefore, the experience of falling ill is built in this continuous process of possibilities and limitations throughout life, bringing along the knowledge built upon concrete facts from his daily routine in relation to feeling healthy and sick However, when the acute phases of the disease became more frequent, Pedro started to perceive diabetes mellitus as a problem.

For him, although the disease lies more and more intensely within his body, it is not part of his life. It is something that came from outside to change his life in a negative way, i. Therefore, we see that, for him, being sick becomes a contingency of the physical manifestations of the disease.

As he experiences an increased frequency and lengthening of the acute phases, which require a stricter control of his lifestyle habits, he tends to see this disease in a more negative way.

In addition, he feels that the restrictions and limitations are like a punishment or orders to be followed, as what rules his life nowadays is a fate that has no concrete meanings in his experience of falling ill. There is a latent, ever-present resentment due to this perception of the disease and the need for control and monitoring, expressed among things we want to do but cannot do because of the diabetes , according to Pedro. In this process of remembering his experience, a valuable contribution of the FLS approach, Pedro evaluated the choices made throughout his life when he was younger and healthy, powerfully shown at this moment of aggravated disease.

In this process, he could also make predictions about his life and his chronic condition.


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And, away from the ideal models of well-being, we perceived that the structure of the daily life of people with diabetes mellitus is based on feelings, practices and attitudes that often coexist in conflict with the many prescriptions and controls dictated by healthcare professionals 9, In this context of life, healthcare is added to the financial difficulties experienced by the patient and therefore intensified. Then we use the money we have to eat. I kept that list so that I could live with it. So I could survive with it. We could understand that he does not associate healthcare with his diet, nor diet with an essential step for treating and controlling the evolution of diabetes mellitus.

The practices and discourse of healthcare professionals constantly reinforce the need to change one's eating habits, but they do not consider how difficult it is for the person to understand that such attention to diet is associated with the treatment of diabetes mellitus and healthcare. In his perception, the restrictions placed on his diet, exposed on the list he was given, force him to survive instead of living longer and better. This clearly shows that the logics underlying professional practices differ from the daily routine of a person with diabetes mellitus. Changes in diet habits do not seem to be a negotiation between the person with diabetes mellitus and the health-care professionals.

Instead, they are seen as an order. Pedro says that he was forced to drop it , showing his difficulty to accept such an order. It should be considered, therefore, that living with diabetes mellitus requires changes in the daily routine and also in the values, in whatever they consider relevant in their lives Perhaps, if diet restrictions were understood as being important for their health, maybe they could be felt as less painful.

This ambiguity between having information about and really understanding seems to be a central issue in the many restrictions and limitations, which the person with diabetes mellitus is submitted to. It could lead to situations of transgressions, double games or theatrics, seen as ways of resisting to the domineering practices and to things that are strongly instituted and regulated 6,9. These situations may be considered as forms of coping through a silent resistance, since such restrictions and limitations are not part of a collective dialogue or the encounter of the caregivers, the professional and the person with diabetes mellitus 7, It can be seen that these coping strategies really permeate Pedro, according to his narratives.

Even though we developed a relationship of bonding and trust, every time we asked him about his diet, he told us what he should eat instead of what he actually ate, strengthening this double game as a way of avoiding judgment and demands from healthcare professionals. Therefore, the diabetic patient says what the professional wants to hear, using subterfuge, games and cunning, since he feels distant from the institutional routine Therefore, the space that should be used for care is deemed ineffective, becoming a space for the reproduction of practices that do not allow these people to voice their opinion, overlooking their knowledge built from their own experience of falling ill and from the health management they need to develop in their daily routine.

Even though professional healthcare practices focused on diabetes mellitus regulate and institute, in an obligatory and persistent way, what Pedro should eat, resistance arises in his daily routine as masks and double games, through which he shows how distortedly this attention to diet is perceived, resulting in his difficulty to relate it with his disease. In Pedro's specific situation, there is also a paradox between what he can eat nowadays and what he was able to eat before leaving the Northeast of the country, with cultural and economic issues arising from this fact.

These can be understood according to his own perspective, mentioning that his financial situation was very difficult when he lived in the Northeast, lacking money to provide for his own household. As such, eating was restricted to whatever he could acquire with the meager resources at his disposal, but there was no diet restriction. In his words,. I can't eat flour. I can't saddened voice eat it. That's what I liked best, you know Nowadays, even with better living conditions, there are several restrictions, even to the point of interfering in his culture as a Northeastern person, which causes him great grief.

Some people say, let's have a barbecue , and they come over and invite me. Pedro does not associate the limitations and restrictions of his current lifestyle with the care routines for his health. By not associating this care with the construction of life norms that make sense to him , he attributes his transgression to his friends, to meetings with Northeastern comrades, which, however, does not lessen his suffering and guilt.

This feeling of guilt stems from the professional approach that starts with how these people receive the diagnosis and how their treatment progresses 10, There's a lot of people who ignore those orders and then they feel sick because of that, right? Even though there is a feeling that reinforces the need to be together, to share time around the table, with the pleasure implied in living collectively and characterizing the socialization provided by the group 6,9 , the pleasure of communion around the table is taken away from the person with diabetes mellitus, since even their piece of bread is literally forbidden.

Conflicts like these are experienced on a daily basis by Pedro, and go far beyond the control that was reportedly incorporated in his life.

Therefore, he needs to establish his own rules in this experience of falling ill, developing other coping mechanisms beyond the imperative aspects of diet control, since eating is not only a source of nourishment, but there is also a strong social aspect to it. It should be considered that one communes with others around the table, i. If one is denied these pleasures, the result is a hampered socialization.

At such times, the family tends to better understand these restrictions and somehow be a possible shelter for socialization. However, at the same time as the family is seen as a place of reference and support, a conflicting feeling of being burdensome can arise, like in the case of Pedro, changing the dynamics in his brother's family, as stated: We feel kind of ashamed, feeling like we're burdening people, you know. Thus, although organic solidarity can manifest within the family itself, there is also the embarrassment due to the several restrictions brought about by diabetes mellitus, causing feelings of inadequacy and retraction from family life 6, And, although Pedro sees diabetes mellitus as a problem , when he feels sick, he uses the knowledge built based on manifestations of the disease and the treatment experienced in his own body instead of the information acquired from the so-called healthcare education professionals offer.

This learning was also due to the experiences shared with one of his cousins, who has also had diabetes mellitus for over 18 years. Even after 15 years with this disease, he keeps on stating that. Feeling ill is seen in signs and symptoms expressed by this body, becoming significant and entailing awareness of these manifestations We can understand that, sometimes, feeling sick becomes an important but negative source of learning, since, in this stage, there is a certain degree of loss of the body's functional capacity.

Healthcare professionals, especially physicians, still neglect this acquired knowledge, even in the adverse situations experienced in the daily chronic condition. When Medicine took over the patient's body, it legitimized clinical knowledge, disdaining the knowledge of the diabetes mellitus patient, built on the experience of being ill, re-elaborating the production of feelings attributed to the process of living 9, We can also see that, as a result of practices that are still fragmented and centered on a situation healthcare professionals describe as a necessity, Pedro's conception of care arises as one that stems from the physician instead of himself, as he states:.

I was always there with the doctor. I never stopped going there. In this perspective, self-observation and self-care are subordinated to the healthcare professional's surveillance over his body. The relationship between physician and patient is built, essentially, within the institutional spaces, through disciplinary actions focused on controlling the patient's routine, mediated by care that is essentially biomedical and centered on the professional The power of such a relationship legitimates and centers healthcare decisions in the physician's hands, excluding Pedro from having a say in his own therapeutic process.

His responsibility and participation as an active subject are reduced, resulting in his denial as a self-caring person. Professional healthcare practices focus on the diagnosis and proposition of therapeutic measures based on clinical knowledge, reading the patient's body in order to objectify the disease. This reasoning disregards the subjective aspects of those experiencing the chronic condition of diabetes mellitus Therefore, Pedro became another one of those docile bodies 17 , who are not included in healthcare planning and management in this space, which should be a reference for collective care construction.

The conception of self-care was built in a distorted way, especially regarding the use of insulin. Pedro reported that it was like a thermometer, marking the evolution of his disease, since it could not be controlled by the pills anymore. At the same time as insulin becomes ubiquitous, another stressful factor arises, represented by the difficulty faced with self-application.

In turn, this made him depend on healthcare professionals at the beginning of treatment, as seen below:. The guy at the healthcare station, he taught me. I' d go there and nobody wanted to do it for me. Do you understand? I had to go there every day to do it. It was really complicated. It was really difficult to get someone to apply it on me. Among other things, she took a break from her choir practice and cancelled her participation in a family celebration.

She did this in order to decrease stress that impacted on her symptoms. At the time of the interview she was just about to start taking up her activities again:. Then, in the spring it became too much for me. The participants were active in searching for health-care or information in situations during which their illnesses were in focus, for example, when they first received their diagnoses or when their symptoms worsened.

Emma first tried to manage her rheumatic pain on her own, but when it increased in intensity she advocated for a follow up consultation to get help to manage the pain:. Then, it was just getting worse. I had extreme back pain, very hard. Yeah, and then I wanted a plan for what would happen thereafter. The participants developed their strategies to deal with health crises over time. A strategy presupposed some knowledge of underlying disease mechanisms, body listening and knowledge of self-management strategies. Mike, who had been diagnosed with diabetes six months earlier, stated that his blood-glucose levels fluctuated and were often very low.

To manage these low glycemic events, he ate sweets and reduced his insulin doses:. Mike: No… like it ought not be… I should not be as low [in blood glucose level] as I am. Interviewer: What do you do about it? Mike: Eat sweets short laugh. I skip the insulin, I do. I take very little… 6 months after diagnosis. Half a year later, Mike had developed a better understanding of the actions and situations that preceded low glucose events, and he often managed to avoid having low blood glucose.

A transitional self-management process was marked by a change in life focus, the identification of new needs, acceptance of the situation, changing of values, acquiring of knowledge, and strategy development. For example, in their first interviews, some of the participants described how they were searching for practical strategies to limit pain or simple rules that would help them to balance their blood glucose levels.

In later interviews, they had changed their focuses on self-management and had tried to find ways to accept and live with pain or to change their life structures. The participants also stated that they had begun appreciating other things in life and prioritizing themselves more. Both Kathy and Philip describe how they have learned to live with their illness:.

You are able to feel well despite having pain every day. It is weird that, you have heard others say, you can learn to live with pain and that you can. Kathy, rheumatism and fibromyalgia, 30 months after diagnosis. Most of all, my family says that I have become humbler. I put more value in my close friends and my family, not putting work first. It has become third, which feels good also. Philip, diabetes, 30 months after diagnosis. The goal of self-management within a transitional pattern was to be able to continue with activities, live a good life despite illness, and slow down to prevent the illness from becoming worse.

Successful management of fatigue and pain took the form, for example, of prioritizing, pacing, adapting activities or replacing former interests. MS, 30 months after diagnosis. A transitional self-management process could also be emotionally painful. Some participants described how they grieved an identity loss or trading off activities.

They adapted to living with illness, which resulted in limited possibilities for being spontaneous and a loss of appreciated interests. John, who had several comorbidities, had not been able to replace his former interests in building and renovation. Meanwhile, Carol who had had a difficult period with pain, hardly leaving her home, had found strategies to manage the pain and planned to take up her studies:.

I have finished with about everything. John, chronic kidney failure, ischemic heart disease, lung disease, a few weeks after being diagnosed with chronic kidney failure. Either you lie there and feel bad or you think; now, I shall manage this. Then, you just do it. Carol, rheumatism, 30 months after diagnosis. Some of the participants were still searching for ways to live after having had their illnesses for almost three years. They realized the need for change but lacked the strategies and support to change their lives.

Emma described how she had been unsuccessful in seeking employment that would suit her needs better; limited support and many obligations being a single parent also impacted her abilities to self-manage:. I will not be able to work more [than part-time]. I will not get well. What should I do now? Will it work out well for me?

When these self-management strategies were described as on demand, the participants understood the problem as short term, symptoms as temporary and stated their illnesses as a whole had minor impacts on their lives. For example, some participants described employing mental strategies on demand when they were recently diagnosed or when they experienced exacerbations. Kevin described how he was afraid of being alone and had sleeping problems a few days after his heart attack. Later in the same interview, Kevin described that he no longer thought much about the event:.

So… that was an ordeal. I noticed [that] when I got home. It was a damn problem. I was lucky that I have a daughter living close who supported this, so she was here. She was probably here, well, six… seven days. Even the son was up here, so he was [here] some days as well. Then you feel a little safer, I needed that then. Even though they were here I had to take those pills because I slept so damn bad. I had to take those [sleeping pills] because at the same time the body needed rest, I had to take those. A few weeks after diagnosis. Peter described how, on the one hand, he started to get used to diabetes management but, on the other hand, found his situation frustrating and restrained his social participation:.

Now it has passed so long [time], at the beginning it was so clear regarding how much you changed your lifestyle. Now it is more like… now you begin to be more used to it, [you] are a little more withdrawn. Peter, diabetes, 6 months after diagnosis. Some participants would try to manage stress with strategies focused on managing immediate problems e. For example, Kevin described how his workplace underwent major changes and, as a result, everyone worked overtime. In the first quote Kevin described his fears of how this stress affected his health and particularly his ischemic heart disease; the other quote described how he tried to manage stress with specific strategies:.

Well the stress does affect me, I have told you that before. And then [in relation to the reorganization at work] I had sleeping problems and the heart beats weirdly. It affected me. Kevin: Deep breaths and try to take it easy and not get stressed up. In contrast, other participants managed stress by trying to change their personal values on performance in an effort to create a stress free life. Margret who has MS , for example, described how stressful situations caused her body to shut down and she had changed her attitude to activities and tried to do activities in a new way to avoid getting stressed:.

Or if you go to town… before [the MS] you could have a long list of things you should do, but I have stopped doing that. Now I go and then I do what I have time for and can. You have to go [to town] without preconditions. The aim of the paper was to describe the patterns by which different types of chronic illness self-management behaviors are developed and maintained over time.

Four self-management patterns were identified: consistent, episodic, on demand, and transitional patterns. Different self-management behaviors were related to those patterns. For example, long-term medication was regularly taken in a consistent pattern, whereas chronic pain management was performed according to a transitional pattern. Behaviors related to the various patterns had different goals and time-lines. Self-management behaviors performed according to a consistent or episodic pattern were often long-term health behaviors that participants tried to incorporate in their lifestyle.

Meanwhile, self-management behaviors performed on demand were behaviors that participants performed to manage an acute problem or health crisis, expecting their health to return to status quo. In contrast, self-management in a transitional pattern was a way for the participants to change their behaviors to adjust to a new way of living with a chronic illness or health condition.

This makes it extremely important to investigate self-management over time.

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The self-management literature can be divided into three types of studies; 1 quantitative surveys investigating relationships between self-management and specific factors, 2 qualitative studies that either explore those relationships or self-management practices in depth and 3 interventions to support self-management behavior. In the first and second types of studies, longitudinal follow up is rare. The quantitative surveys often investigate specific self-management behavior relationships to different factors such as self-efficacy or income level.

For example, Small et al. In contrast, qualitative explorative studies often focus on self-management regimens and not on individual behaviors. This study is different in that it adds a description of how various self-management behaviors are enacted and maintained over time.

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This is previously not described with qualitative methods. In this study taking long term medication was the most consistent performed behavior. That could depend on the fact that the participants did not find taking long-term medication difficult to perform, once they had developed routines for taking their medications.

In contrast, diet and lifestyle changes were performed according to a consistent pattern by some participants and an episodic pattern by others. The results indicate that participants who managed to be consistent with their diet or exercise had developed routines and habits for those behaviors long before they got their chronic illness. Corbin and Strauss [ 17 ] suggest that management work can be made into routine, but routines are often disturbed by events or issues that disrupt the normal flow of everyday life.

This seems to be one reason to why exercise was particularly difficult to maintain over time. In accordance with the literature, this study identify several barriers to exercise, like chronic pain and fatigue [ 36 ], disruption of habits [ 35 ] and lack of family support [ 20 ]. The participants in the study were motivated to change their lifestyles.

As described in the background, qualitative studies describing the process of developing self-management strategies and behaviors have reflected either chronological or fluctuating models [ 37 ]. However, while the patterns of self-management identified in this current study contained elements found in both chronological and fluctuating models they did not mirror any of the models as a whole.

In keeping with the chronological model of developing self-management e. This was particularly true for self-management related to on demand or transitional patterns. However, there were participants who did not develop their self-management strategies or behaviors over time; moreover it is also possible that individuals might be experts in some of their self-management behaviors but not in others.

When the participants engaged in a transitional pattern they described changes in attitudes, values and intrapersonal conflicts, which also are evident in the fluctuating model of self-management development e. It was interesting that some self-management behaviors e. When participants understood their symptoms as chronic they needed to make substantial changes in both their everyday lives and identities.

This kind of self-management is categorized as living with illness by Schulman-Green et al. In contrast, participants who used an on-demand self-management pattern did not find a need to change their everyday life; instead they looked for solutions to their problems or waited for acute problems to subside. However, some self-management actions were applied by so few participants that the patterns were not reliable. For example, only four participants tried alternative therapies, and therefore alternative therapies were excluded from the analysis.

Most of the participants stated that they ate healthy e. To obtain more precise descriptions, a diary could have been used to collect data for some self-management behaviors such as diet. Labeling self-management behaviors was also a challenging process: For example, stress management could be a category of its own or a part of fatigue management or an important aspect of managing employment and work. In this process some self-management behaviors were labeled in more than one category at the beginning and the categorization had to be reflected upon and changed several times before final decisions about categorization were made.

This was seen in particular in behaviors such as long-term medication and exercise. It is possible that this is an additional self-management pattern. However the participants enacting this possible pattern were so few so the pattern could not be described in a comprehensive and credible way. Future research might answer the question if this is an additional pattern. All of the participants lived in Sweden; consideration should be given regarding how that fact may have affected the results.

Nonetheless, the overall descriptions of self-management development patterns are likely to be transferable to a wider context of people self-managing chronic illnesses. However, individuals in other countries might describe other kinds of self-management behaviors, barriers or facilitators, for example, more alternative therapies or access to self-management programs.

According to the findings of this study self-management behaviors follow different patterns over time. This study identified four different patterns. All participants described using three or four different patterns depending on the type of self-management behavior. The most frequent form of continuous self-management involved adhering to medication regimens, whereas health promoting behaviors, such as exercising or healthy eating were more episodic in nature, especially for those who had not established prior patterns of healthy living behaviors.

It was of interest that the work of managing the emotional consequences of living with a chronic condition was approached in very different ways by study participants. Whereas it was easier for some participants to address stressors as a health crisis to be managed in the moment, for others it was important to change the way they viewed their relationship with their illness and, in so doing, change how they managed its effects on their everyday lives and sense of self. Self-management over time has not been well described in the research literature. This study provides evidence of the multiple ways that persons living with chronic illness effectively manage their illness over time.

Self-management behavior develops according to different patterns, and therefore, health-care providers might need specific support strategies for various behaviors. People who are likely to experience severe episodes or acute events should have access to information beforehand concerning how an event could develop and the possible strategies to address it.

Little research has been conducted on how to support transitional processes in people with chronic illnesses, and the topic should be further investigated. Regarding implications for self-management programs, this study highlights the need for self-management programs to emphasize all aspects of self-management and problems related to life with a chronic condition and not focus on one aspect, for example, secondary prevention or disease knowledge.

Public Health Rep. Int J Health Serv. J Clin Nurs. Health Serv Res. Chronic Illn. Gatt S, Sammut R: An exploratory study of predictors of self-care behaviour in persons with type 2 diabetes. Int J Nurs Stud. J Cardiovasc Nurs. Diabetic Med. J Gerontol. J Gen Intern Med. Diabetes Care. J Aging Health. J Nurs Scholarsh. Qual Soc. Ann Beh Med. J Fam Nurs. Implementation Science. Med J Aust. Br J Community Nurs. Cochrane Database Syst Rev. Heart Lung. Can J Nurs Res. J Nurs Healthcare Chron Illn. Qual Health Res. Nurs Res. Pat Edu Couns. Licentia thesis.

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Thorne S: Interpretive description. Res Nurs Health. Gen Hosp Psychiatry. Adv Nurs Sci. Arthritis Care Res. Osteoporos Int. Rehab Nurs. Download references. This article is published under license to BioMed Central Ltd. Reprints and Permissions. Search all BMC articles Search. Abstract Background There currently exists a vast amount of literature concerning chronic illness self-management, however the developmental patterns and sustainability of self-management over time remain largely unknown.

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Method Twenty-one individuals newly diagnosed with chronic illnesses e. Conclusion The findings show that self-management does not develop as one uniform pattern. Open Peer Review reports. Self-management In this paper, self-management will be defined as the strategies a person undertakes to control disease, promote health, and live well with illness [ 13 — 15 ].

Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness
Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness
Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness
Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness
Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness
Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness
Life Happens : Living a Healthy Life despite a Chronic Illness Life Happens : Living a Healthy Life despite a Chronic Illness

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