To examine the relationship between illness fluctuations and how people with ankylosing spondylitis (AS) adapt to everyday life situations.
To examine the relationship between illness fluctuations and how people with ankylosing spondylitis (AS) adapt to everyday life situations.
Twelve respondents, 8 women and 4 men, age 30–59 years with an AS duration of 6 months to 40 years participated in qualitative interviews. They were asked to give examples of how they lived their everyday life during good and bad times of illness. The text analyses consisted of familiarization with the content, identifying and coding meaningful statements, sorting them into categories, and condensing themes.
Three different types of situations for those living with AS emerged from the analysis: ordinary life, slowed-down life, and disrupted life. Ordinary life included managing symptoms by incorporating motion into everyday life routines and adjusting tasks in work situations, sports activities, home life, and social activities. During slowed-down life, an acute or insidious onset of stiffness and fatigue occurred that could be reversed by slowing down ordinary life for a period of time. During disrupted life, the respondents were unable to cope with everyday life because of inexplicable and unmanageable intense, localized, or distributed pain.
By examining the relationships between illness and what people do to recover, 3 different life conditions were found: ordinary life, slowed-down life, and disrupted life. Living with AS requires a continuous but varying process of normalization of symptoms and everyday life within the framework of these 3 illness conditions.
The individual prognosis of ankylosing spondylitis (AS) is uncertain (1). Moreover, the disease course is unpredictable, including periods of partial remission and disease flares marked by overwhelming fatigue, incapacitating pain, and crippling immobility (2). Also, day-to-day symptom fluctuations are reported (3). The present study examines how illness fluctuations interfere with everyday life.
In patients with other chronic diseases, illness has been reported to disrupt people's biography and everyday lives at home, work, and leisure time, as well as to influence self-concept and ideas about the future (4–10). However, chronic illnesses may also include positive aspects like developing new meaningful lives, creating new opportunities, self-development, and control over everyday life (5, 11–13). It became obvious that what the respondents did in everyday life could be interpreted in terms of reversing symptoms and normalizing everyday life situations. Therefore, the concept of recovery became central to the data analysis and interpretation. The ASsessment in Ankylosing Spondylitis group has decided to evaluate recovery as an outcome in terms of normalization of symptoms, spinal mobility, and performance of standardized everyday tasks (14). However, the recovery process literature inspired the data analysis (5, 13, 15). This literature emphasizes the individual in recovery, and how the individual uses available resources to restore or create new meaningful ways of living. Such processes can be understood as personal journeys comprising complex dialectic relational processes between the individual and their ways of managing different social situations and contexts (16). A metaphor used by one of the respondents also became important in understanding the complexity of living with AS: “Life with AS is like being in a spider's web. You can't get out, but there are many roads you can choose for making the best of it. It's important to find the right road. Many roads lead to Rome, but I have to find the one that suits me. You have to keep your balance so the threads don't give way, because then they have to be tied together again. Then the web gets tighter and there aren't so many roads. It's like balancing on a knife edge.”
The aim of this study was to examine the relationships between illnesses and how people with AS adapt to everyday life situations.
A qualitative approach with in-depth individual interviews was chosen. In order to obtain a broad picture through a heterogeneous sample (17), native Norwegian-speaking respondents of different ages, sex, employment status, severity of disease, and functional disability with clinically confirmed AS were recruited from an ambulatory physiotherapy clinic (n = 5), a rehabilitation center (n = 6), and an invitation published in the Norwegian Patient Association Journal (n = 1). Disease activity was expressed in terms of the mean Bath Ankylosing Spondylitis Disease Activity Index score, measured on a scale from 0–100, with 100 being the highest disease activity (18). The study conformed to the Helsinki Declaration and was approved by the Norwegian Data Inspectorate and the Regional Committee for Medical Research Ethics.
The interviews started with warm-up questions about name, age, and disease duration, followed by open questions about how the respondents lived before they developed AS and how they lived during good and bad periods of illness. Probing questions were asked, such as “Can you say more about that?”, “Can you give examples of situations where your illness plays a role?”, or “What do you do in these situations?” Notes were written immediately after each interview on key issues that arose during that interview. These notes were used as a guide for the subsequent interviews and the analysis.
The interviews lasted for 50–90 minutes. They were tape recorded and transcribed verbatim. The analysis was guided by 2 questions: “How are good and bad periods described, and what is done?” and “Which categories can be derived from the text?” The texts were read several times in order to obtain an overall picture. Meaningful statements were identified and coded. Categories were developed by identifying patterns of codes (19). Comparisons were made within and between codes, categories, themes, and the text as a whole. Themes were refined relating to the differences in relationship patterns between symptoms and how the respondents managed their everyday lives.
Eight women and 4 men were interviewed. Seven were employed full-time and 2 were employed part-time. Their mean age was 53 years (range 30–59), mean AS duration was 11 years (range 0.5–36), and mean disease activity score was 40 (range 11–61). Seven were educated at a college or university and 4 lived with their families. Two women and 1 man ages 41–59 years were disability pensioners. Their AS duration ranged from 13–40 years and their disease activity scores varied from 68–87. They had <9 years of education and 2 lived with their families. Three respondents were interviewed at the researcher's workplace, 6 at the rehabilitation center, 2 at their workplace, and 1 in a hotel.
An overall trait was that some bodily discomfort was always present, but most of the time this was hardly noticeable anymore. However, stiffness increased when the respondents remained still for some time: “And that's what I notice all the time. That I mustn't sit still. Even driving a car is something I don't like much, because I get stiff at once—after only half an hour. So that's what I notice most, really—it doesn't take much for me to become completely stiff.”
Movement was the key to preventing and reversing stiffness. Respondents often woke up during the night and moved about in bed or walked around. They also integrated motion into their daily habits at home and at work; for example, by serving coffee during meetings and distributing items from copying machines and printers. Environmental adjustments were also used to make moving necessary in a natural way: “It's very important to have the copying machine in one place and the envelopes in another and to always be moving about.”
Another important strategy was to avoid aggravating symptoms by avoiding overexertion. Overexertion was especially related to tasks that placed a strain on the back, neck, and arms (for example, bending, carrying, or lifting heavy items). But it was also associated with the duration of activities; for instance, one respondent described how the “body took revenge” after dancing for an entire evening. The respondents gave examples showing how they had adjusted tasks: “Avoid sitting in deep chairs, take a cushion to use on hard chairs. And shoes, which shoes I use. I've stopped wearing shoes like high heels—I wear orthopaedic shoes or good shoes with soft soles.”
Adjustments had become a natural part of their ordinary lives; for example, one respondent described how surprisingly difficult everything had become after the family moved to another apartment. Then the family realized that they had made many adjustments over the years.
The respondents had incorporated various nutritional supplements into their diets, such as vitamins and cod liver oil. It had also become important for them to eat vegetables and fruit, and some food items and beverages could increase stiffness: “If I eat pork I get sort of stiff around the chest and so on at once. I feel it in my hands—they stiffen up. No alcohol. I know if I have a glass of red wine—I haven't completely given it up—I feel my hands and knees and so on stiffening up at once. So I try to eat fish and vegetables and things like that.”
The respondents stressed that they wanted to carry on a normal life for as long as possible, and work was an important aspect. They wanted to contribute on equal terms and not be a burden on colleagues. Some respondents had changed jobs or plans for education to avoid strenuous tasks, working long hours, or jobs that could not be adjusted to their need for motion: “You can adjust and reorganize a lot of things. And I've become an expert at reorganizing. I've also reorganized my own job without anyone really noticing.” Suitable working environments were created in many different ways and often in ways not noticed by other people: “I now manage a shop that sells clothes, shoes, handbags and things. Generally I'm very pleased with this. It's a fine job. But it wasn't what I intended to do. Because when I'd finished studying and got a job and worked very hard like young academics do, I had to go on sick leave. I had inflammation in my hip joints and back and everywhere. I was on sick leave for three months. Then I thought that I can't live like this and I chose really to do something about it. And since then I haven't had any sick leave because of the AS. In my present job—well there's quite a lot of office-work here too, but I'm moving about all day—tidying the storeroom and things—it varies.”
The respondents talked a lot about the importance of training. Several respondents had exercised regularly prior to illness, but some sports had to be given up, such as handball, football, squash, basketball, jazz ballet, and athletics. They had found more suitable sports like tennis, cycling, swimming, yoga, jogging, skiing, walking, and working out at exercise studios. In cases where sports had to be given up, respondents often exercised in warm-water pools or participated in exercise groups for patients: “The disease has upset my life a lot. I used to play handball—I can't do that anymore. I used to like playing squash—I can't do that anymore. There are a lot of activities I can't do, but I cycle to work and work out at an exercise studio.”
Everyday life activities at home were related to housework and care of children, partners, and elderly relatives. In general, the respondents said that they could mostly do what they had always done: “I don't vacuum or wash windows. But there's really nothing else I can't do. If I can do it in my own way and at my own pace there's almost nothing I can't do.” However, heavy loads and strenuous tasks like shopping, gardening, and house repairs were allocated to close family members, often partners: “I had a partner who was—you could say—keen on outdoor recreation—so we've done that a lot in our family. I've been able to adapt to these activities. I've seen to it that I don't have to carry a rucksack or anything heavy like that.”
Several examples were given of how the respondents maintained or established new friendships. Scheduling appointments with friends was described as a problem because of the unpredictability of AS. An example of how to get around this and hide bad days was to invite friends home instead of going out. Practical problems were also mentioned; for example, staying the night with friends or at hotels because of unsuitable mattresses. Then plans had to be made for making the situation more suitable.
Several examples were given for making new friends. For example, one man who had been seriously ill for long periods of time said, “I became a real patient—I must have been hospitalized about 70 or 80 times. I lost many of the friends I used to have. Yes, I did. First I lost contact with them for several years. And then you were very ill and things so you weren't the same when you came back. But I made new friends when I was staying in various institutions. Now I've moved home to where I grew up and I've made contact with some of the people I knew before.” The new friends often had rheumatic diseases, and a respondent's physiotherapist could also be described as a friend and confidant. Their new friends were appreciated because they understood their situation and could discuss illness-related problems in meaningful ways.
One pattern found in the data was a condition where the respondents said they had increased stiffness and tiredness, but could reverse these symptoms by their own actions. During this condition, the body was different from usual and required greater attention. The symptoms followed either an acute or an insidious pattern. Typical of the acute form was the fact that the symptoms were reversed after a 20–30-minute break, a kind of time-out where the respondents laid down, stretched, and relaxed: “No, it's like—you're sitting working and suddenly you're desperate to lie down. That's what I call acute exhaustion. It's not so much that you need to sleep, it's more that you need to relax all your muscles—get yourself mobile again. When I get that exhausted feeling, I have to lie down for a bit.”
The insidious onset of tiredness and stiffness would be noticed upon waking up in the morning. In this case, the respondents ascribed the changes in symptoms to a bad night's sleep, changes in the weather, or overdoing things the previous day. On such days, they said that they tolerated less than they usually did, and slowed down their ordinary activities in order to recover: “I get noticeably more tired. It's like the feeling that I can't do anything. I'm a person who wants to do so much, I want to, I want to—but I don't manage to. You've heard of that? And when I do get to do what I want, I'm kind of punished afterwards. Then my body says, you haven't been very clever. You could say I've overridden my body. I need the next week to recover. I have to stop being so active and not do so much. I read a lot, and do Pilates exercises—stay quiet and calm so that my body can recover again.” One respondent said, “I'm usually fine until late autumn, and then I start getting stiff. February and March are the worst months. It's been so cold for such a long time and then it just gets worse and worse. So those are actually the worst months of the year, and then there are two months which are pretty difficult before it really helps. Yes, I do work, but at those times I don't manage to do much else. I work full time, and I try to exercise. Maybe not every day, but I try to do a bit—but not as much as usual.”
Disrupted life was the result of a pattern of intense painful sensations that could not be reversed by the respondents' own actions, and that created uncertainty about what this signified and what to do. This occurred rarely, about 2–3 times a year, and without any apparent reason. During these periods, the body claimed attention all the time. Motion and rest, which were otherwise effective methods of restitution, now aggravated the pain. During these acutely painful attacks the pain fell into 2 patterns: either localized to a single part of the body or distributed between several parts. The localized, intense pain was in the hip region, ribcage, or spine. It was described as a feeling that the joints were locked and as an inability to move; for example, to walk, breathe, bend, or turn the back or neck: “It's not just bad, it's so bad I can't walk. It happened once at an airport where I had to use a wheelchair because I couldn't stand up. It's quite true, I couldn't stand up—my legs, or my leg, it gave way when I stood on it.” These disabilities interfered with most of their daily life activities. They could not relieve the pain by their own actions, they used painkillers and physiotherapy to get some relief, and they waited for recovery to occur: “The pain is worst in the chest. It comes suddenly and I get—kind of locked in my chest. It forces me to bend forwards. I can't sneeze or cough—nothing. It just shrinks here (points to the chest). I do try and use painkillers, but the best thing is to try to coax things and keep calm—I have to stretch out my upper body so I'm not so bent. Then after about one or two weeks it gets better again. I've also had massages in the painful places—that helped a lot.”
The pattern of inexplicable, intense, distributed pain was described more or less like having influenza. It was difficult to perform even the most basic personal care activities and to concentrate. Painkillers only alleviated the pain to some extent, and they had to wait several weeks before recovery occurred: “You don't feel well and you're tired and it hurts in several places. Typically this autumn, when my arm suddenly goes funny—and my neck and arms and back. Everything gets worse, and I get kind of strange—it hurts in several places where I've never noticed I had pain before. Everything just, it was thrown at me—everything was just much worse. So then you feel worse and you're more tired. I was, actually I was really, really exhausted.”
Three different conditions related to living with AS were identified: ordinary life, slowed-down life, and disrupted life. During ordinary and slowed-down life, the increased discomfort was prevented or reversed by adapting everyday activities and environment. During the disrupted life period, intense, inexplicable, and unmanageable pain that could not be reversed by one's own actions prevented all or most ordinary activity.
Achieving a normal life has been found to be the preferred outcome among people with rheumatoid arthritis (20–22). What the respondents did in different conditions and everyday life situations can be understood as a process to normalize their symptoms and everyday life. However, normal life can be understood in several ways. Cultural normalcy is related to inherited explicit and implicit sets of shared rules and ideas within a society that tell us how to view, experience, and behave in relation to other people and the environment (23). In Western societies, the importance of work and taking responsibility for one's own health through physical exercise is strongly emphasized. The respondents conformed to this view by stressing the importance of work and exercise. The respondents who worked did not talk very much about home and family life. The pensioners, however, provided detailed information on home and family life and exercise. Their home and leisure activities are also in conformity with the cultural norms of the society. In other words, what the respondents considered important and meaningful was in line with cultural norms, but their lives could still differ from their prior normal life.
According to the recovery process literature, the concept of normalcy relates to what each individual thinks is an acceptable and meaningful life (5, 13). Normalcy for the individual is changeable, situational, and contextual (24). One aspect of individual normalcy is related to what life was like before the disease compared with what it is like with the disease. In this study, symptoms and everyday life varied in different degrees and ways from what they had been before the respondent developed AS. However, I found that the respondents had become used to these changes. The ordinary life condition can therefore be understood as a description of redefined normalcy. However, it was also clear that this normalcy was constantly threatened, and the complex adjustments they made during ordinary and slowed-down life can be interpreted as ways of protecting their redefined normal life. The respondents were continuously on guard to detect changes in body sensations, and often managed through their own actions to reverse symptoms and maintain normalcy when stiffness and tiredness became worse. In contrast, during episodes of inexplicable and unmanageable pain, the sensations could not be reversed by their own actions and both their bodies and their everyday lives went out of control (9, 25). One could say that their life's normalcy fell to pieces.
An unfamiliar body beyond one's own control can be described as an assault on our being in the world (23). The respondents' descriptions of ordinary and slowed-down life conditions show how they had made situations comprehensible and manageable, and in some way kept control over their body and life situation. In contrast, during disrupted life condition, the body and life situation were beyond the respondents' own control. The situation was also incomprehensible and unmanageable. Antonovsky has shown that comprehensibility and manageability of life conditions are important in developing a sense of coherence between self and life situations (26). Osborn and Smith have pointed out that having chronic unmanageable back pain separates body from self (27). My findings also suggest that inexplicable pain separates people from normal life.
Self-management denotes any self-initiated, self-directing action in everyday life activities to preserve physical, social, and emotional wellness (28). The present study shows how self-management in the form of adjustment to and of the environment is incorporated into everyday life activities. Other forms of self-management included seeking help from health professionals or waiting for recovery to occur. In the disrupted life condition, some respondents accepted that they had to wait, and in the meantime they used painkillers and physiotherapy to endure the pain. But others were less certain that this was the right thing to do. They wondered whether the symptoms reflected disease progression that could only be stopped or slowed down by medical treatment. Therefore, when their symptoms could not be explained by factors like weather, overexertion, or food intolerance, they felt they needed a medical explanation.
The degree of trustworthiness of a study reflects the degree of confidence in the credibility of data and their interpretations (17). Because the researcher is the instrument for obtaining, analyzing, and interpreting the data, the researcher's reflexivity concerning how preconceptions shape the analytic and interpretation processes is important. Although insight is needed for interviewing and interpretation, it can also limit the ability to identify new perspectives and interpretations. I believe that my clinical experience as a physiotherapist and my knowledge of disease, illness, and recovery from medical (29, 30) and sociological perspectives (31, 32) enhanced my reflexivity during the research process. Identifying the different levels of illness deepened my understanding of these conditions. However, one limitation of the analysis is that it was not validated by other researchers or the respondents.
In qualitative interviews, the respondents and the researcher are coproducers of data (33). In some interviews, it was difficult to perceive any coherence in the respondent's statements, whereas in others it was easy. After reading one confusing interview text several times, I reread all the texts in order to find out what made them easy or difficult to understand. It struck me that in the understandable interviews, the respondents talked to me as an experienced teacher talks to an uninformed student. In other interviews, the respondents spoke like students expressing unfinished thoughts to an experienced listener. Reading the transcripts again in this light, I was able to use the texts of the teachers to categorize those of the students under the 3 themes, and the students' texts helped me to perceive nuances in the information within each theme. This step became a means of critically assessing the findings of the analysis.
Individual, contextual, and situational data can be obtained through qualitative interviews, but the findings must be transferable to other people, situations, and contexts. One way to judge transferability is to examine variations in data. I found considerable variations within the categories, but did not identify any new categories during the last 3 interviews. Nevertheless, the data may not be exhaustive, and there are no prior studies that would clarify this. Another aspect of transferability is the heterogeneity of the sample. Because this sample is a clinical one, it seems likely that the findings can be transferred to clinical settings.
My findings suggest that living with AS consists of a continuous, lasting process of normalizing symptoms and everyday life. The respondents said that they had learned effective self-management by trial and error on their own, and they felt that health professionals should have facilitated this process. This suggests that important issues for patients are not incorporated into our professional body of knowledge, which is a challenge to both clinicians and researchers. This study could be used as a basis for development and evaluation of rehabilitation programs that take into account the relationships between particular everyday situations and the individual's skills, resources, and ability to meet challenges in everyday life. This would be in line with the ideals on which rehabilitation is based (34, 35).
By examining the relationships between symptoms and what people do to recover, 3 different life conditions were found: ordinary life, slowed-down life, and disrupted life. Living with AS requires a continuous but varying process of normalization of symptoms and everyday life situations within the framework of these 3 illness conditions.
Dr. Mengshoel had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study design. Mengshoel.
Acquisition of data. Mengshoel.
Analysis and interpretation of data. Mengshoel.
Manuscript preparation. Mengshoel.
I would like to thank the respondents for being willing to share their experiences, as well as to PhD student Hilde Stendal Robinson, RPT, and the physiotherapists at Skogli Rehabilitation Centre, Lillehammer, for recruiting informants to the study. Gratitude is also expressed to Associate Professor Kari Nyheim Solbrække for reading previous drafts of the manuscript and contributing valuable reflections during the writing process.