Adapting to a New Identity

Reconstituting the Self as a Heart Patient

1Apart from its negative literary connotations, the notion of adaptation generally carries an optimistic connotation in the sense that it is most often associated with an improved outcome in the face of challenging circumstances. However, this is not an inevitable response to an adaptive imperative: there are often indicators of significant failure to adapt. In short, there is often evidence of maladaption. Examples include the spiralling rates of heart disease, obesity and adult-onset diabetes that have characterised richer western populations over the past half-century.

2Arguably, the West as a whole has failed to adapt to the health opportunities provided by plentiful food supplies. Instead, a growing dietary emphasis upon refined carbohydrates (including simple sugars) and animal-sourced protein (including dairy foods) is harming these populations. This paper applies the metaphors of adaptation and maladaptation to the development of a new sense of self following a diagnosis of heart disease.

3There is a range of evidence to suggest that newly-diagnosed heart patients resist accepting the implications of lifestyle-related heart disease. Such a lack of acceptance can impact upon short-term health, exercise and diet priorities, as well as upon long-term life expectancy. While this paper does not describe a medical, but a cultural approach to the well-adapted self as heart patient, it is also important to stress that there is a significant range of heart conditions that are not lifestyle related. Counterproductively, the links increasingly made between lifestyle choices and heart disease mean that many heart patients feel “punished” by people with healthy hearts who seem to assume that the patient is to “blame”. Nonetheless, there are few heart patients who cannot positively impact their health and recovery prospects by improving lifestyle choices. Ladwig and his research team argue that the challenge lies in getting heart patients to take their illness seriously without precipitating a traumatically negative view of the experience of illness. Such a negative view may, in itself, facilitate poor outcomes. These perspectives indicate that issues of communication and identity—that is, cultural imperatives—are important determinants of a healthy recovery.

4This paper records and analyses recent research relating to heart patients who are members of an online support community, HeartNET. HeartNET is an experimental Website funded by two Australian Research Council Linkage Grants (2004-10), with the National Heart Foundation (WA Division) as the industry partner. The authors/researchers speculate that engagement in the HeartNET online community enables the positive adaptation of an individual’s sense of self (rather than the fostering of a maladaptive identity, including a denial of the implications of heart disease that can lead to behaviours which promote morbidity). Early indications are that supportive online interactions can foster the development of a positive persona of a “heart patient“. At the optimistic end of the response-spectrum, a positive heart patient is a person who is keenly motivated to maximise their health and—if possible—halt or reverse (see, for example, Esselstyn) the progress of their disease. Such a response can be constituted and enhanced via supportive online interactions.

5Insofar as medical commentators theorise about reactions to a life-changing health diagnosis, this tends to be in terms of self-image (see, for example, Petrie et al.) and sometimes includes Kubler-Ross’s stages of grief: Denial, Anger, Bargaining, Depression and Acceptance. The results reported here look instead at issues of adapting to a new identity as “heart patient” that potentially involves positive commitment to improved health, partly as a result of giving and receiving social support. The rationale behind this perspective is influenced by significant evidence that compliance with the therapeutic regimes recommended and prescribed by physicians is lacking. It is speculated that patients are enacting a denial of the importance of the health challenges confronting them. For example, Hugtenburg et al. found that “of 232 first-time chronic medicine prescriptions [repeats], 132 were not collected at all (46.1%) or too late (11%).” Noting that 46% of the 232 prescriptions studied were for cardiovascular drugs (353), Hugtenburg et al. conclude that “This kind of non-compliance may result in an increased health risk as well as constituting a waste of a large amount of money” (352). Clearly, more emphasis needs to be placed on communicating constructively with patients and supporting the evolution and reconstitution of an identity that includes positive constructions of self-as-heart-patient and that works to facilitate recovery.

6The Website that enables the HeartNET community was developed by the National Heart Foundation (WA Branch: NHFWA) and Edith Cowan University (ECU) as part of an ARC-Linkage grant, 2004-6 “Evaluating the effectiveness of online support in building community, promoting healthy behaviours and supporting philanthropy”. The first three months of the Website’s operation (when the tiny number of postings trickled away and then dried up completely) are reported in Bonniface et al. (“Affect”) and graphed below (see Figure 1). They followed on from a careful process of recruitment via databases of existing heart patients that were held by the NHFWA and supportive cardiologists. Participants were approached to gain ethical consent, and would-be Website participants were matched with people who had equivalent heart illness, but who weren’t invited to join the HeartNET community, thus acting as comparisons.

7Baseline data was collected to compare “before” the HeartNET intervention with the yet-to-be collected “after” data. The idea was to see if there were differences between the online and offline groups that could be attributed to Website activity. Instead, the first version of the supposed-community remained stillborn, and it wasn’t until the Website was thrown open to all comers that it began to thrive. This was a preliminary indication that an invitation to participate in a therapeutic community was not effective, by itself, in encouraging communication with people who shared important health-related experiences. While Website engagement might have fitted comparatively well into a (Kubler-Ross) Bargaining approach to heart patients’ illnesses (“I’ll help others, and they’ll help me”) the default position appeared to be non-engagement, possibly an indication of the patients having become “stuck“ in the first stage of grief, Denial. Even though the initial HeartNET participants were well established as heart patients, and had all been diagnosed some time earlier, it is possible that they preferred to ignore the implications of this for their health.

8Figure 1 records the patterns of postings made by the 68 people who agreed to join the HeartNET Web community and who signed and returned the ethical consent forms. Of the 68 people recruited, only 53 logged on (despite phone calls to every individual) and of the 53 who logged into the site, only 22 posted (Bonniface et al. “Affect”). The heaviest week’s traffic was 40 postings in Week 4. By Week 12, activity had ceased entirely. The decision to relaunch had been taken a fortnight earlier and the first iteration of the Website was closed down.

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Figure 1, reprinted from Bonniface et al (“Affect”)

10The relaunch of the Website made it available for anyone interested in participating, and membership and traffic both grew exponentially. Amongst other innovations were “newbie” icons (to indicate new members to be welcomed and nurtured), guest status (to “try before you buy”), and symbols to indicate whether the member was a heart patient, a family member or supporter, or an administrator. In due course a “ratings system“ was added to indicate the total number of member-postings to date, so that people could gauge an individual’s commitment and contribution to the community. People contributing up to 150 posts to discussion boards were allotted from one to five stars, while Superstar status indicated 1000-plus posts.

11One of the major differences between the group of heart patients invited to participate in the site’s first iteration, and the group that ultimately launched the Website as a viable and vibrant community, is that the second-stage members were generally recently diagnosed. The research team speculate that they were actively reconstituting their identities as heart patients, and they and their families consequently had many matters and issues they wanted to discuss. In effect, the people who joined the relaunched site were “learning“ to be heart patients.

12Weis et al., investigating a pharmaceutically-sponsored Website for MS sufferers, argued that “users are diverse” and “communication needs change over time [as the disease progresses]” (146). They found that, of the 943 users who responded to their online survey, indications were that participants used “the website the most during early stages of the disease” (135). However, one area the HeartNET research is investigating is whether a community-member whose persona includes “care and support for my Web community“ will continue to participate even after the first information-seeking phase of their illness is over.

13Support offered for new heart patients by cardiologists, hospital staff, other specialists and general practitioners is an important part of the enculturation of the self-as-heart-patient, but it leaves unexplored the more personal work of reconstituting the individual’s identity as a person with heart disease (or as a supporter of such a person). It also leaves unaddressed the sense of “aloneness“ that HeartNET members say they feel until they are able to talk regularly with people who understand exactly what they are going through, as a result of having already “been there“ themselves. Although health professionals, family and friends are supportive, that support is only occasionally able to cut through the isolation. Extracts from two (separate) interviews are typical of the kinds of comments made:

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Murphy: I mean the support from Sandra and the family was all great but—to actually talk to other people who know what you’re feeling and … Yes, nothing against family and friends but they’re [other patients are] going through the same thing, they know what you’re feeling and … you know.

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Margo: I found friends were pains. It was like “well, okay, but you’re better now, they fixed you.” Well I looked at her and I said, ‘“You’re never fixed, but [it’s] something you live with for the rest of your life that doesn’t go away. …’

16The implication is that heart patients have a differential need to communicate with others about their experience of heart disease, and that the communicative imperative is greatest in the first stages of being a heart patient, soon after diagnosis. For the well-established patients invited to contribute to the original HeartNET Website, their status as people-with-heart-disease was no longer problematic. Consequently, they had little to say and very few incentives to revisit the adaptive processes of personal identity construction. People who are used to their status as a heart patient may be theorised as having very different information needs and behaviours compared with the newly diagnosed. There is evidence that at least some of these well established patients were prompted to engage when new patients who needed support joined the site in the second iteration. However, those who are never given the opportunity to interact and learn from others may take longer to reach a level of adaptation. Even worse, they may adopt maladaptive behaviours encompassing issues of denial or self-sabotage—such as rejecting medications or increasing behaviours which progress morbidity, such as smoking and excessive alcohol consumption.

17Patients’ denial of the implications of heart disease is recognised as a major medical problem. Cooper et al. (234) cite evidence from Petrie et al. that “only a third of eligible patients under 65 years old attended cardiac rehabilitation” while noting that “Ades et al. showed uptake as low as 21% in eligible patients over 62 years”. In another study of patients who did/did not adhere to their pharmacological treatment regime, Horwitz et al. found that “Compared with patients with good adherence, patients with poor adherence were twice as likely to have died within a year of follow-up.” They argue that “adherence may need to be viewed more broadly as encompassing a cluster of health-related behaviours that may influence the outcome of treatment.” The argument advanced in our paper is that such a broader view should also encompass necessary adaptation strategies which introduce positive influences to the formation of patient identity.

18Compliance with therapeutic and medical regimes has been linked to increased self esteem (Burkhart and Rayens), and the combination of compliance with a positive patient identity may well multiply beneficial health outcomes. Whereas currently a majority of recovering heart patients may be inferred as resisting a revised self-identity that takes their diagnosis and health challenges seriously, the HeartNET Website may offer an effective enticement to positive behavioural change.

19Bonniface et al. (“Shuffling buddies”) have demonstrated that engagement with HeartNET can influence attitudes to (and involvement in) exercise. The hypothesis regarding identity adaptation is that active HeartNET members, through Website engagement, consistently indicate a willingness to acknowledge their changed health status and work to develop a reconstituted identity as a person with a heart condition who is proactively maximising positive outcomes (and helping others to do so at the same time). This is particularly the case where the online engagement feeds into the offline world: where “shuffling buddies“ have developed mutually supportive walking and exercise regimes, involving social events, consistent with their commitment to health-enhancing activity.

20Adaptation strategies delivered online offer new ways to counter the maladaptive processes which can follow diagnosis. By using the raw materials of social support and Website engagement, patients can chart new and positive ways in which they progress from denial and bargaining to health-promoting acceptance. For those established patients, online engagement may progress the stages of grief beyond the level of acceptance to the end goal of “support” as they pass on their knowledge, empathy and understanding of illness to the newly diagnosed.