This chapter explores the Internet’s democratizing potential by considering how people diagnosed with bipolar disorder re-appropriate medical perspectives and combine them with personal insights to contribute to the development of new knowledge. Using de Certeau’s theory (1988) of creative tactics in everyday life, it is argued that through their online interactions, people diagnosed move beyond the performance of lay expertise and collectively generate “digitally informed hypotheses” about the effectiveness of treatment for bipolar disorder. Even though the Internet affords individuals diagnosed a voice, it is one which can have a broad epistemic impact only when heard and taken seriously by researchers.
The materials used in this chapter from the blog Bipolar Burble have been included in an article titled “Bipolar Patients and Creative Online Practices: Sharing Experiences of Controversial Treatments,” which was published in the journal Health, https://doi.org/10.1177/1363459319838315.
While patient engagement in mental healthcare has a long tradition, as already mentioned in the first chapter, since the late 1980s a series of factors has led to a growing responsibilization of people in regard to their health (Petersen & Lupton, 1996) and has stimulated them to contribute to the production of knowledge. The Internet has played an important role in such developments (Wyatt et al., 2013), as it has allowed people diagnosed to enroll in medical studies more easily, to engage in practices of self-monitoring and -experimentation, and to exchange information with more people with the same diagnosis than was previously possible. Yet, while patient engagement is welcomed and encouraged, what exactly is meant by it, what patients are expected to contribute, and what the limits to such contributions are or should be remain debatable (Adams, 2011; Lupton, 2018). These issues are exacerbated online by the variety and specificity characterizing both mental health conditions and online platforms, which shape the content and character of interactions. More research is needed to map out what patients contribute online, and to understand how such contributions are contextually shaped.
Whereas the previous chapter showed how official institutions performed expertise about bipolar disorder, the current one marks the turn in this book toward the various activities undertaken by people diagnosed with bipolar disorder and the different types of expertise they perform online. We remain close to medical perspectives on this condition, however, as this chapter shows how people diagnosed with bipolar disorder use blogs and fora to share their treatment experiences. This way, the role the affordances of online platforms can play in the coordination required for the practical achievement of expertise is highlighted. Using de Certeau’s theory (1988) of creative tactics in everyday life, I argue that through their online interactions, they move beyond the performance of lay expertise and collectively generate what IFootnote 1 call “digitally informed hypotheses” in areas where the currently available medical knowledge on the effects and side effects of medications is insufficient. In so doing, we will leave behind the focus on how expertise is achieved through the coordination of digital elements on relatively static stages and immerse ourselves in the coordination of exchanges among diverse contributors that are mediated by the affordances of blogs and fora and that underlie the development of these “digitally informed hypotheses.”
Problematizing Patient Engagement
People diagnosed with mental health conditions have assumed a growing role in the production of knowledge, as the provision of treatments and caring practices has shifted in the context of deinstitutionalization from medical environments to more private and non-clinical settings, such as homes and community centers. As such, patient engagement in mental healthcare has developed under various forms, ranging from clubhouses and self-help and support groups (McLean, 2003), focusing on the societal reintegration of people diagnosed with mental health conditions, to social movements, such as the psychiatric consumer/survivor/ex-patient movement, whose members “attempt to shape treatment to respond to their own needs” (Morrison, 2013: ix). Since the early 1990s, people diagnosed have also participated in the provision of psychiatric care, as paid or voluntary case managers, facilitators, or peer support providers (Davidson, 2005). As such, they have been involved in numerous ways not only in care but also in the production of knowledge about treatment.
More recently, patient engagement has been encouraged through top-down and grassroots initiatives meant to improve the provision of mental healthcare and to render it more cost-efficient. Social media and digital technologies have played an important role in these developments, as they have provided new avenues for patient engagement, which have been both celebrated and critiqued. In the early days of the public Internet, some commentators expected this medium to empower patients, contributing to the re-appreciation of lay expertise (Hardey, 1999). Others have criticized digital technologies as a means for creating free labor, as a neoliberal practice of outsourcing tasks and responsibilities onto individuals while decreasing social provisions (Lupton, 2020; Rose, 2018; Thomas, 2016). Most medical sociologists and media scholars agree, however, that digital technologies have contributed to more active conceptualizations of the role of patients (Felt, 2015). The personal experiences of (pre)patients have become all the more important (Prainsack, 2017), as the adoption of big data analytics in healthcare and the drive toward precision medicine make highly diverse data necessary (Lupton, 2020), including next to traditionally “medical” markers, information such as credit card purchases, and social media interactions (Weber et al., 2014). This has contributed to new perspectives on what counts as evidence (Hogle, 2016) and to intensified calls for individuals to engage in self-monitoring practices and to contribute information.
As the emergence and popularity of movements such as “The Quantified Self” (Lupton, 2016) indicate, many people have responded enthusiastically to such calls and have engaged with numerous digital technologies, such as self-tracking devices, wearables, implantables, and external sensors, to track diverse bodily states, patterns of activities, and moods, thereby contributing to the generation of new types of data. Most such data have been numerical, thus allowing the users of these technologies to identify patterns in the data, to combine different data sets to arrive at novel insights, and to engage in various comparisons. Depending on their preferences and the available data policies, individuals have thus been able to contribute to the development of new medical knowledge and products in more and less direct ways. Thus, they could share their insights at collective, “show-and-tell” events, such as those organized by supporters of The Quantified Self movement, and they could carefully monitor and provide relevant health data at specific intervals on online platforms such as PatientsLikeMe or CureTogether or participate in various one-person trials (Schork, 2015). But they could also be among the (knowing or unknowing) providers of health data aggregated by initiatives such as IBM Watson Health, the Apple ResearchKit, or Genomera. While researchers and medical professionals have been mainly interested in data generated through digital self-tracking devices, patients and their families have also provided valuable qualitative information, in the form of accounts shared on interactive digital platforms, such as blogs and fora, where they could share their experiences and enrich their knowledge through the narratives provided by other contributors.
Attempts to determine the knowledge of patients have a long history (Segall & Roberts, 1980), and more recently patients’ use of online platforms has served to further problematize their relations with medical professionals and to nourish ongoing discussions about the type and relevance of the knowledge each party contributes (Versteeg et al., 2018). While medical knowledge is generally seen as relying upon scientific and clinical insights, patients are often ascribed experiential knowledge, that is, “truth learned from personal experience with a phenomenon rather than truth acquired through discursive reasoning, observations, or reflection on information provided by others” (Borkman, 1976:446).
Two main strands can be distinguished in the debate about the meaning and relevance of patient engagement. Building upon Borkman (1976), one group (Collins & Evans, 2002; 2007; Prior, 2003) focuses on the experiential knowledge of people diagnosed, which they see as stemming from their direct experiences with a condition and argue that such knowledge is different from that acquired formally, through specialized training. Proponents of the other perspective (Arksey, 1994; Epstein, 1995) reject such a strict distinction and highlight the substantial role people diagnosed can play in the development of medical knowledge. Arksey (1994) put forward the notion of “lay expertise” to acknowledge the substantial technical knowledge people could acquire informally. Epstein further developed these insights, showing how some AIDS activists had “learned the language and culture of medical science” (1995:17), and were thereby able to engage in and change medical research and clinical practices. Both positions have shortcomings: while the first perspective conceives of expertise and experience as opposite poles on a continuum, the second runs the risk of expertise being depleted of its substantial character, if applied too generously.
Wilcox (2010) provides a helpful perspective for the analysis in this chapter. She argues that lay expertise should be understood as “collective knowledge that may be widely available yet is still unevenly socially distributed” (2010:45). This is reinforced by studies of health-related online behaviors that have shown that “[s]ocial media platforms facilitate the sharing of health information between users and the co-production of new knowledge that is shaped by personal experience” (Sosnowy, 2014:316). While previously patient associations collected and processed the experiences of numerous individuals diagnosed to transform them into collective knowledge, I argue that such practices are nowadays facilitated by blogs and fora. Authored by one or several individuals and updated regularly, blogs comprise posts on a variety of topics, listed typically in reverse chronological order. Fora are online platforms where individuals can post messages and read those of others along “threads” where insights on a specific topic accumulate, turning fora into rich discussion databases. While on blogs, people diagnosed mainly contribute as reactions to the posts shared by the blog author(s), on fora, even though threads can also be initiated by the forum owner/administrator, they are largely developed by individual users, who want to receive advice on a particular issue. Importantly, both blogs and fora may enable collective processes of knowledge production by bringing together people with the same diagnosis but endowed with different types of knowledge, skills, and resources, by facilitating their dialogue, and by preserving their exchanges. These online platforms are worthy of scholarly attention, since “[h]ealth issues are today often negotiated in parallel with professionals in institutional settings like hospitals and among peers in activities taking place online” (Bellander & Landqvist, 2018:1).
Lay Expertise and Bipolar Disorder
Lay expertise is often articulated in situations when scientific knowledge is lacking, when it has not yet stabilized or when issues are too complex to be solved using only one type of knowledge (Baillergeau & Duyvendak, 2016). This makes its study in relation to bipolar disorder relevant. As already mentioned in Chap. 1, while its causes are not precisely known (Frey et al., 2013), bipolar disorder is thought to be determined by a combination of genetic, neurological, and environmental factors. Treatment is prescribed in a rather formulaic fashion, and there is still limited understanding of how the prescribed medicines work. Finding an effective treatment regimen for any individual patient may take several months or years. In the case of bipolar disorder, therefore, there is a significant amount of space for people diagnosed to contribute to knowledge, making it an interesting site to study patient engagement and the performance of expertise.
According to Britten and Maguire (2016), while medical professionals appreciate patient engagement in various aspects of clinical practice and research, patients’ experiences about treatment have not been sufficiently acknowledged. Furthermore, whereas new drugs prescribed for mental health conditions are assessed based on short clinical trials (involving typically six weeks of exposure), many of them are used as maintenance treatment. This means that “the effects of these drugs as used in practice are not known” (Frank et al., 2005: 292) and “decisions about payment, inclusion, placement in formularies and clinical management are usually not informed by data on long-term clinical or economic consequences” (ibid.). What further complicates matters in the field of mental health is that treatment compliance and adherence remain problematic, leading to important tensions between medical professionals and people diagnosed. Nonetheless, in a highly influential study, Martin (2009) has described the complex attitudes people diagnosed with bipolar disorder develop toward their medication and has highlighted the substantial knowledge they have about their own symptoms and reactions to treatment. These are therefore aspects about which people diagnosed with bipolar disorder may be very insightful, and the Internet could provide a welcoming space for those among them who want to share their treatment experiences and contribute to the development of new knowledge.
Studying Tactics Online
Over the last few decades, official institutions have increasingly emphasized the need to inform and consult the public about scientific findings and research agendas. This has contributed to the distribution of scientific information in numerous shapes and across different media. According to Epstein (1996:177), “debates about the safety and efficacy of treatments travel with particular ease between the pages of scientific publications, the mass media…” due to their highly politicized character and the different types of stakeholders involved. Since finding effective treatment is a priority for people diagnosed (Thompson et al., 2012), such debates no doubt reach them, and they may subsequently adapt the information conveyed for their own purposes (Sharon, 2015). The concept of “tactics” developed by de Certeau is therefore useful, as it allows me to analyze the creative ways in which people diagnosed with bipolar disorder take up elements of the dominant discourse regarding the effectiveness of medications, and transform them in their attempts to adjust treatment to their personal needs and preferences. De Certeau (1988: xix) defines tactics as ingenious actions through which individuals seek to re-appropriate dominant representations by adapting them to their own needs, rules, and goals. Tactics “must constantly manipulate events in order to turn them into ‘opportunities’” (De Certeau, 1988: xix).
The concept of tactics is pertinent because the online contributions of people diagnosed with bipolar disorder, which I argue that collectively contribute to the development of digitally informed hypotheses, are not always organized and institutionalized, nor do they occur outside the confines of the dominant medical discourse. They rather represent creative practices undertaken from within the dominant order, whereby people diagnosed seek to render the space of medical knowledge about the treatment of bipolar disorder more “habitable.” Thus, in the analysis I focus on the perspectives of online contributors, on how current medical views on the treatment of bipolar disorder are understood, taken up, and adapted by them. Tactics are time-bound and therefore appropriate for studying blogs and fora, where people use their creativity and different types of knowledge to interact with others, where the meaning of each individual contribution is co-determined by the content put forward by others, and where it is positioned, in time as well as in space, in relation to it. This concept is also useful because online contributors need to take into account the restrictions imposed on them by platform owners or administrators. Tactics emphasize the malleable, equivocal nature of lay expertise, as the study of blogs and fora makes us more aware of how the engagement with medical insights on bipolar disorder changes depending on the readers’ interpretations and needs, and on how the experiences of the contributors putting them forward develop.
Since in de Certeau’s framework, tactics represent creative adaptations of dominant representations, I first sought to delineate the main characteristics of current medical knowledge on the treatment of bipolar disorder by engaging with the literature. This involved an initial consultation of relevant sociological studies (Collin, 2015; Healy, 2008; Lakoff, 2005), followed by the review of 30 medical articles published between 2000 and 2016. The characteristics arrived at this way were further refined by reading the abstracts of 15 medical articles published between 2010 and 2018. Three main characteristics were identified and they guided the analysis of the online data.
Online data were gathered from one French and one American interactive platform. Le Forum des Bipotes (LFB) is a forum developed by a person diagnosed with bipolar disorder. LFB was founded in 2007 and functioned until 2014. While it is no longer active at the moment, it enjoyed great popularity and it is still maintained online as a source of information. Bipolar Burble is the personal blog of Natasha Tracy, who is diagnosed with bipolar disorder. She enjoys celebrity status in this world, as the blogs she has authored have repeatedly been listed among the top best blogs about bipolar disorder, and appear on the first page of results by search engines such as Google. Blogs and fora have the advantage of containing contributions by different stakeholders in relation to bipolar disorder, allowing for a comparison of the ways in which medical information and other types of knowledge are dealt with online by people in different positions of authority and endowed with different resources.
In choosing these online platforms, I aimed to mimic the approach of regular users, and, using the Google index as an indicator of relevance, I limited the selection to the results provided on the first 30 pages. The selection was further refined by excluding multiple pointers to the same item, and by filtering out blogs which were not in English, which had been established for less than one year at the moment when the selection took place (September 2014), and which had few contributors (<10). From these online platforms, I selected 10 entries/threads which covered information on the treatment of bipolar disorder, broadly understood, and which had more than 30 comments each. The data were analyzed using computer-mediated analysis (Herring, 2012) and building upon insights from sociolinguistics (Blommaert, 2005), which highlight the action-oriented and power-laden character of language. An asset in itself, language is also a means to acquire other resources and to achieve specific goals, such as claiming a particular identity, displaying a certain type of expertise, and distinguishing between different claims. For the sake of accuracy, excerpts are reproduced as they appeared online, with no spelling or grammar corrections, and French quotes were translated by the author. As already mentioned in Chap. 1, to respect the privacy of the online contributors and to avoid their identification, their usernames were replaced by pseudonyms and the dates were slightly modified. I will first describe the three characteristics of medical knowledge on the treatment of bipolar disorder identified and will then discuss their re-appropriation on blogs and fora.
Three Characteristics of Medical Knowledge on the Treatment for Bipolar Disorder
Treatment for bipolar disorder focuses on mood stabilization and maintenance and combines medications and psychotherapy. Its prescription occurs in a context where the production and interpretation of clinical evidence remains problematic in mental health, as
[p]sychiatry has a long history of trying to identify predictors of differential pharmacological response, but these attempts began before the evidence-based medicine (EBM) approach was born, were not deployed in the context of RCTs, and were not tested in RCTs. These attempts came from a different tradition, the mechanistic tradition.… (de Leon, 2012: 156)
In the mechanistic tradition, the effectiveness of psychiatric drugs is due to their action upon specific mechanisms in the brain. In the aftermath of the Human Genome Project, the rise of personalized and precision medicine has contributed to numerous attempts to identify genetic markers for bipolar disorder and the biomarkers that render some of the people diagnosed with it responsive to specific treatments. As “the rapid progress in the ‘-omics’ fields makes the notion of evidence a moving target” (Khoury et al., 2008: 1606), nowadays different types of evidence can be produced in multiple, innovative ways, in different settings and involving different stakeholders (Collins & Varmus, 2015). Nevertheless, the studies undertaken thus far have only been mildly successful in providing clear insights on the effectiveness of treatments for bipolar disorder, whereas attempts to identify biomarkers to explain the heterogeneity of drug responses among patients have generally been unsuccessful. Based on the literature review I undertook, I propose that current medical knowledge about the treatment of bipolar disorder is characterized by uncertainty, complexity, and individualization.
Uncertainty is “characterized by self-awareness of incomplete knowledge about some aspect of the world” (Han, 2013:16). In the medical field, “[t]he evidence in which different uncertainties are manifest ranges from anecdotal clinical observations to data from randomized clinical trials” (ibid.). Uncertainty about the treatment of bipolar disorder is informed by methodological issues derived from important characteristics of this condition, such as the considerable heterogeneity in the definition and assessment of a mood episode, relapse (Young & Newham, 2006), and therapeutic response. While EBM has led to “an ever-increasing demand for standardization and improved quality in psychiatric treatment” (Geddes & Goodwin, 2001:191), there is still a lot of uncertainty regarding the mechanism of action of various drugs used for the treatment of bipolar disorder. For example, anticonvulsants were introduced in the treatment of bipolar disorder because of certain similarities between this condition and epilepsy, but the current understanding of their action mechanism remains superficial. While the use of any antidepressants in the treatment of bipolar disorder is controversial, studies have reported important variations in their efficacy and tolerability. Yet, there is limited understanding as to the causes of such heterogeneity. Uncertainty also exists in relation to side effects, and this is the case even for substances which have been long prescribed in the treatment of bipolar disorder. For instance, reports on the degree to which long-term lithium use may lead to renal failure or to congenital malformations, when taken during pregnancy, are ambiguous.
Uncertainty is sometimes due to a lack of clarity, but there are also situations when it is due to a gap in knowledge. Various treatment combinations are often prescribed in clinical practice in response to patients’ needs, side effects, or other medications they take, while there are no study results available to confirm or discourage such practices. Another type of uncertainty is linked to patient behavior, particularly treatment adherence. For instance, even though lithium is frequently prescribed and is considered to be highly effective for mood stabilization, it may prompt more frequent episodes if it is abruptly interrupted. This is another aspect that renders treatment effectiveness more difficult to define and assess. At the same time, it indicates that treatment decisions need to be based not only on the best available evidence regarding the effectiveness of particular medications, but have to consider treatment adherence and the elements which mostly influence it (Levin et al., 2016).
Complexity denotes the multiple factors which may play a role in the development of a disease and/ or in an organism’s reactions to treatment and the awareness that changes in any of these factors may affect others in unpredictable ways, while sometimes remaining themselves hard to foresee (Plsek & Greenhalgh, 2001). In the case of bipolar disorder, complexity is derived from the diverse causes of this condition and the multiplicity of factors involved in its therapeutic approach, which make it difficult to assess the effects of specific elements and interactions and to make informed decisions about treatment. Numerous findings show that the effects of various medications used in the treatment of bipolar disorder not only are influenced by the level of specific hormones and other bodily values but are also importantly shaped by one’s genetics (Craddock & Sklar, 2013) and hereditary make-up. For instance, only 30% of people diagnosed with bipolar disorder are responsive to lithium and researchers have been able to develop a general molecular and functional profile of this group. While such responsiveness was thought to indicate a subtype of bipolar disorder, more recent insights suggest that lithium responsiveness is linked with certain symptoms and is heritable (Tighe et al., 2011). Genetic insights indicating that bipolar disorder is not a discrete entity have further contributed to the complexity characterizing the search for treatment, guiding such endeavors across traditional diagnostic boundaries (Harrison et al., 2016). The environment in which one finds oneself provides another complicating dimension (Harrison et al., 2016). Factors such as climate, family situation, workplace stress, and especially shift work, which disrupts night and day rhythms, also influence treatment effectiveness. Comorbidity further complicates current understandings on treatment effectiveness, as medicines prescribed for other conditions may interact with the bipolar disorder treatment, leading either to different effects altogether or to weaker or stronger effects than expected. The timing when particular interventions are used also seems to importantly determine treatment selection and effectiveness. Thus, different medical combinations are considered depending on the condition’s developmental stage (Sachs, 2004) and on the age of the people diagnosed. For instance, studies suggest that the use of psychoeducation to prevent relapses is most effective during the first years after diagnosis, with much more modest effects when taken up later (Miziou et al., 2015). Furthermore, the effects of particular medications only become fully manifest after being taken for a long period of time without interruptions.
Individualization understood as individual variations in treatment response has recently come more and more to the attention of researchers (Bates, 2010), and constitutes a move away from “standard” approaches, where reactions to medications are studied among relatively large groups. While the hope is that at some point treatment response will be studied at the level of each person of interest, individualization currently denotes practices which focus on subgroups of increasingly smaller sizes, as distinctions are made at greater levels of specificity. From this perspective, attempts at determining treatment effectiveness in the field of mental health have also been strongly influenced by developments in the field of pharmacogenetics, as various studies have shown that determining a patient’s genotype can help when deciding upon the prescription of specific antipsychotic drugs (Tanaka & Hisawa, 1999). At the same time, various studies have focused on how and why particular subgroups diagnosed with bipolar disorder react differently to specific substances, requiring higher or lower dosages for the intended effects. Insights from personalized medicine have led to a growing awareness that evidence about treatment effectiveness requires taking into account parameters such as dosage, form, and frequency and that genetic, hereditary, and environmental factors may trigger different reactions in different individuals (Hedgecoe & Martin, 2003). Developments in genetics have prompted medical researchers to hope that genetic loci playing a role in the development of bipolar disorder will be found, leading to the identification of biomarkers and to the development of more effective treatment pathways and targets (Squassina & Pisanu, 2013). There has also been a growing recognition that “an individual’s unique life circumstances… influence disease susceptibility, phenotype, and response to treatment” (Ziegelstein, 2015: 888). Next to genetic or genomic markers, various personal categories, many of which are dynamic and change numerous times throughout the life of a particular individual (Naylor & Chen, 2010), have thus come to play a role in the development of knowledge about the treatment of bipolar disorder. This way, the evidence about treatment effectiveness has been expanded to include “psychological, social, cultural, behavioral, and economic factors of each person” (Ziegelstein, 2015:888).
In the remainder of this chapter, I will show that such realizations are not restricted to the pages of academic publications, but reach people diagnosed with bipolar disorder, who engage with them both to achieve practical goals and to contribute to the development of new knowledge.
Engaging with Medical Knowledge About the Treatment of Bipolar Disorder Online
The analysis of the online data revealed that people diagnosed were aware of current medical knowledge on the treatment of bipolar disorder, as the following three tactics were identified: the mobilization of the notions of uncertainty, complexity, and individualization. Rather than being merely neutral spaces where these exchanges unfolded, I argue that blogs and fora allowed for individual hunches or suppositions to thicken into what I call “digitally informed” hypotheses about new factors that may influence the effectiveness of treatment. As we will see below, the narrative format specific to contributions on such platforms enabled people diagnosed with bipolar disorder to describe in great detail their various states, to select the aspects each of them found important and meaningful to share in the absence of pre-set rubrics and criteria, and to convey contextual information and aspects of the qualities of their experiences that generally resist quantification. This way, online contributors could provide more clues about the applicability and relevance of their insights, they engaged dialogically in the assessment of the views and experiences shared by others, and they used different, additional standards to evaluate the credibility of various statements.
The design and affordances of blogs and fora played an important role in the development of “digitally informed hypotheses.” Thus, they enabled online contributors to engage in various interactive practices whereby personal views or assumptions could solidify and acquire a more general character: by liking specific contributions, by directly reacting to them through comments and expressing similarities of experience, and by providing hyperlinks to studies and other resources in their support. Furthermore, blogs and fora allowed for the longitudinal accumulation in the same space of similar experiences, even when conveyed through fleeting exchanges by occasional contributors. This made possible the gradual emergence of a limited body of evidence, pointing to fruitful areas for further inquiry or, as was mostly the case here, self-experimentation. Whether or not certain personal insights turned into collectively generated hypotheses was often a question of repetition, accumulation, and visibility. This process was thus not only informed by the urgency of the aspects under discussion, but also informed by how skillfully various online contributors could mobilize online affordances and by the flexibility allowed by the platform owners/administrators. The latter were influential through the various rules they set regarding the type of content that could be made available, the word limit for each contribution, and the modality in which insights could be shared. Worth to be mentioned here are, for instance, Tracy’s decisions to provide links on her blog’s homepage to the blog entries with the highest number of comments and to those with the most recent comments, which kept them in the attention of her audience and increased the likelihood that they would accumulate more contributions. The curatorial work the forum administrator engaged in also shaped the visibility of some insights, as he moved comments made on the one thread onto another which he considered more suitable, and re-positioned certain threads on the first page of the forum when major social and cultural events suggested they would be of interest. Thus, “digitally informed hypotheses” about the effects and side effects of medications emerged as online contributors re-appropriated the notions of uncertainty, complexity, and individualization through interactions mediated by the technologies of blogs and fora.
People diagnosed sought to address medical uncertainty about the effects of certain substances by engaging in self-experiments. In so doing, they mobilized uncertainty through their ability to locate and manipulate important gaps in relevant medical knowledge, both at the scientific and clinical level, thereby identifying a space which could mainly be furbished through the insights they provided. For instance, in a post from October 2011, Tracy argued that a certain chemical substance might be a new cheap and effective supplement in the treatment of bipolar depression. She cautioned, however, that, while promising, the evidence was limited. In the aftermath, her readers tried this substance, kept careful track of their reactions to it, and shared their experiences at different moments in time:
I started taking it about 6 months ago after reading your blog about it. I have had no side effects and have had no depressive episodes either. I have had a mixed episode but the depressive symptoms were much less than they would normally be. I’m still cautious about saying it has helped and still monitoring but so far so good. Thank you for mentioning it in the first place. We are all different and some people may have negative effects, that’s the same with anything. I would say give it a go. (Jane, November 7, 2014)
I’ve been taking [substance name] for about 18 months now, I have had no side effects, the depressions have not been as bad and I think possibly the highs are less too. I do get psychosis and I haven’t noticed any effect on this. Although my doctor is sceptical I will continue to take it. Hopefully if the trials are successful doctors will be more likely to suggest this treatment. This same doctor recommended glucosamine for my arthritis so it’s not that he is against supplements. (Jane, November 19, 2015)
Something akin to a hierarchy or an attempt at a systematic assessment becomes apparent in both comments, as Jane focuses first on the presence or absence of side effects, then on this substance’s effects on depression, for which it is intended, and only later on its impact on other symptoms. While the first quote testifies to the influence online bloggers have upon their readers’ treatment, both excerpts suggest that people diagnosed make sense of their experiences with medications in a relational way. In her first contribution, Jane solves the dissonance between her findings and those of other people diagnosed by invoking the uniqueness of each person and echoes Tracy in recommending it to others. In her second comment, experiential and medical knowledge are described as being at odds with each other, as Jane’s tentatively positive findings and intention to continue taking the pills are set against her doctor’s doubts. Given Jane’s awareness about the limited amount of clinical evidence available, her sharing activity and encouragement for others to try this substance may be seen as an attempt to help fill these gaps in medical knowledge. The mild improvements she describes further suggest that she may make treatment decisions using lower effectiveness standards than medical professionals. Medical uncertainty may therefore be a cause for hope in certain instances and may help to keep people diagnosed motivated and actively engaged with their treatment.
French online contributors re-conceptualized uncertainty to test medical claims about the benefits some of the medications they took for bipolar disorder could have upon other bodily processes. Thus, various online contributors shared insights which they had acquired from their doctors about the neuroprotective effects of lithium, as well as their own opinions and experiences in this respect:
This is what my shrink says:
Lithium protects against Alzheimer’s. For my mother this seems to be true thus far….
Sometimes I don’t know who or what to believe… (Oliane, September 7, 2012)
At the time when contributions such as this were made, the mechanisms through which lithium achieved its neuroprotective effects remained unclear (Forlenza et al., 2014). The available evidence about these effects was largely derived from preclinical trials and from retrospective registry studies conducted on people diagnosed with bipolar disorder. Whereas Oliane invoked the psychiatrist as well as the experiences of her mother to legitimate the claim about lithium’s neuroprotective effects, it gradually acquired more credibility, as more contributors confirmed having heard about these effects, and having taken the claim seriously enough to base treatment decisions on them:
I’ve also heard this about Alzheimer’s, and also for multiple sclerosis. (Kat, September 8, 2012)
My psychiatrist at the expert center in Marseille says that lithium reconstitutes the neural connections that explode under the effect of bipolarity. It also protects from Alzheimer’s disease.
These arguments have tipped the scales even for me, who am a rebel when it comes to taking drugs. I agreed to resume a lithium treatment. I’m starting tonight. He also prescribed Xéroquel. But to that one I say no! I’m still fighting it. (Annemarie, September 8, 2012)
The highest level of credibility ascribed to this view was provided by Bipote_Admin, who referred to lithium’s neuroprotective properties as a fact:
Apart from that, as Annemarie says, the neuroprotective and even trophic effect of lithium is worth mentioning because it opens up new therapeutic perspectives. An increase in the volume of gray matter, especially in the frontal lobe, has been observed in patients undergoing lithologic therapy. A thymic episode is neurotoxic and its repetition can cause neurobiological damage. (Bipote_Admin, September 8, 2012)
The use of medical terminology and the passive voice serve to render this claim more credible and neutral. The last sentence echoes the views NIMH put forward that we discussed in the previous chapter, and it indicates that Bipote_Admin’s insights were informed by an understanding of bipolar disorder as a brain condition. Since many of the clinical studies which had confirmed this hypothesis were based on neuroimaging techniques (Bearden et al., 2007; Machado-Vieira et al., 2009), this can be seen as an indication of the degree to which this online contributor had internalized medical knowledge.
The excerpts above show that reframing uncertainty in terms of tactics is helpful to understand how people diagnosed with bipolar disorder negotiate medical knowledge to turn their personal experiences into valuable contributions. Other complex factors that can influence treatment effectiveness are discussed below.
People diagnosed with bipolar disorder mobilized the notion of complexity online, as they sought to put forward new factors informing variations in the effectiveness of medications. Not content with merely describing the particular effects they experienced, online contributors actively sought confirmation or additional information from others regarding these experiences, often so that they could use such insights as resources to better negotiate with medical professionals in favor or against the prescription of specific medications. Generics were often mentioned in such contexts by American online contributors. For instance, they invoked the complexity of interactions between the various substances contained in this type of medicines and the role variation in their different dosages may have to put forward the hypothesis that their effectiveness varied:
Ugh! This weekend I picked up a refill (…) At home, I realized the pills looked different. I took them but experienced NO relief whatsoever. I took the bottle down to the pharmacy and insisted they were not what I had been receiving only to be told they WERE. I know what I take and what my pills look like after all this time. A second visit with another pharmacist at the same pharm told me that indeed they had switched generics on me. Did you know that the FDA allows a 20–30% variable amount of the active ingredient in generics. I did not until LOTS of research. You have to be your own doctor AND pharmacist, apparently… (Marina, October 6, 2014)
Marina’s comment depicts this hypothesis as the outcome of a discovery journey and traces this contributor’s development from the classical “good patient” described by Freidson (1970), who was willing to comply with medical advice even when the pills looked differently, to more recent understandings of patienthood, which conceive of people diagnosed as interested in educating themselves about their condition and assuming an active role in its management. The unfolding of the events described in this quote further serves to reinforce the unbiased character of Marina’s claims, as she only became distrustful when confronted with an embodied experience—the pills’ lack of effect—and set out to find out more information about generics, their compositions, and pharmaceutical regulations once this experience was legitimated by a “traditional” expert. That people diagnosed with bipolar disorder take up the role of investigators to make sense of their personal experiences about medication is illustrated by one of the reactions to Marina’s contribution:
My doc told me it’s a 40 percent swing… Issue is the filler… Different manufacturers use different fillers which can effect how the med is used by your system. Some can come on strong while others are weak… Many braded pills have 10 manufacturers or more and they are mostly overseas. The FDA could give a hoot. I find that most pharmacists know very little also… Probably because they have so many different meds to deal with… And, if you notice many generics have gone up in price tremendously since the branded aren’t available…Money. Money, Money. (Jack, October 6, 2014)
This exchange illustrates how people diagnosed take up a potential factor an online contributor suggested to influence the effectiveness of medication and try to make sense of it building upon their own experiences and insights. In this case, the varying effectiveness of generics is confirmed and further explanation for it is sought not only by considering the different action of the chemical compounds used, but also by relating it to their manufacturers and to the more or less strict legislation existing in the countries where they are based. Importantly, these comments indicate that online contributors ascribe the limited or incorrect information they receive from different sources to different causes: some unintentional and due to systemic issues, such as the pharmacists having a hard time to keep up with all the new types of medications available, while others intentional and due to corruption, such as official bodies failing to intervene due to their close ties with the pharmaceutical industry. Since the latter are depicted as mainly motivated by commercial interests, the hypotheses people diagnosed develop based on their personal experiences about treatment acquire more credibility among online contributors. The failure of certain governmental agencies to involve and inform the public in more effective ways about their regulatory procedures may thus have a negative impact on their public image and contribute to shifts in the tasks and cognitive authority of different stakeholders. In this context, people diagnosed with bipolar disorder may become more influential and succeed in re-positioning themselves in relation to medical professionals and even researchers through their more active engagement in the production of new knowledge and through the existence of an audience willing to take their insights into account.
People diagnosed with bipolar disorder also re-appropriated the notion of complexity to refine medical insights about some of the factors influencing treatment effectiveness. This was, for instance, the case for a, certain atypical antipsychotic which is recommended to be taken with a meal. Whereas in her blog post Tracy described recent study results which specified the number of calories required per meal for this medicine to be effective, online contributors further specified these insights by arguing that not only the number of calories influenced treatment effectiveness, but also the types of proteins consumed, as the following quote illustrates:
I don’t know the correct spelling [of medication] (…) I have this med down to a science. I eat a homemade hamburger … at 12:30 p.m. and then I drink a small chug of milk at 1:15 p.m. and then finally another hamburger and glass of skim milk at 1:45 p.m. If you eat the second hamburger and glass of milk any earlier than 1:45 p.m. it will not work and you will be sick for the next 12 hours. Then you must repeat the process at 12:30 a.m. You also cannot drink any water after taking [name of medicine] until you wake up. You can take one swig of water here or there but I try not to. One thing that has worked for me is not eating or drinking anything from 9:30 until 12:30. [name of medicine] is a trial and error drug and I have schooled my doctor on what works. (Watson, March 9, 2015, quote slightly adapted to ensure anonymity)
Striking here is the level of detail and precision provided by Watson, whose claim to expertise is based on the substantial knowledge he acquired through the varied tinkering practices that he engaged in to fine-tune what he considers to be the most effective approach to the intake of this medicine. Even though Watson spells the name of this medication wrongly, his recommendation is bracketed at the beginning and at the end by his claim to scientific authority, which is further emphasized by the description of a reversal in positions between himself and his doctor. Such statements serve to increase the legitimacy of the insights Watson provides, whereas the dissonance between his incorrect spelling and the authoritative character of his statement suggests that he may consider practical knowledge, with which he believes to be endowed, more important than abstract, theoretical insights.
Other online contributors re-appropriated the complexity of symptoms of bipolar disorder to advocate for an expansion of therapeutic interventions, so as to include, next to various combinations of medical treatments and “talk” therapies, elements of interior design, atmospheric aspects, such as air pressure and humidity, and the use of specific objects:
Have you done EMDR [Eye Movement Desensitization and Reprocessing]? What about a Sun Lamp? There is 1 on Amazon by Sphere Technologies that is $69. It has the highest reviews on Amazon. My friend lent me one and I have been using it for a 8 days. You want to get one that is 10,000 lux and I have seen them as low as $49. (…) I think the sun lamp is worth a shot. It’s primarily made for people with SAD [seasonal affective disorder]. I am also going to start volunteering at the animal shelter as a “Cat Socializer”. You just go and play with the cats and it makes you feel better, and of course the cats too, and makes them more adoptable. (Roger, April 11, 2015)
This quote suggests that for this particular contributor personal experiences as well as the evaluations provided by others on online platforms such as Amazon constitute reliable evidence in favor of taking up potentially therapeutic procedures. At the same time, Roger is dedicated to providing other contributors with accurate insights, as he carefully situates his claims by mentioning for how long he had been using the sun lamp and by clearly stating that it was primarily developed for another condition. The details about the price of this technology and how he came to use it are illustrative of the financial considerations that people diagnosed with bipolar disorder who live in the US need to take into account when evaluating their treatment options, and were echoed by many other contributors.
The comparison between the French forum and the American blog revealed that these considerations were importantly shaped by social and cultural factors. While the effectiveness of generics or the cost of objects ascribed therapeutic value were important topics among online contributors in the US, they were not mentioned by French contributors, whose insurance coverage spared them such worries. Furthermore, the analysis of the online data suggested that the blog studied here was at times an important venue through which American contributors, who were no longer insured, could benefit from up-to-date insights on available treatments, as they gained access to medical information. Online exchanges thus came to replace, to a certain extent, medical encounters, as some uninsured online contributors, who had to pay out of pocket for medication, used the treatment experiences and information shared by others to determine what medication would be most effective for them. In contrast, American and French contributors who were insured claimed to have other motivations for engaging in online exchanges. Thus, some wanted to share the insights they acquired on the factors affecting the effectiveness of treatment with their doctors, whereas others wanted to determine whether or not to contact other medical professionals when their own doctors were away or, in some cases, to figure out whether their experiences were serious enough to warrant disturbing their doctor while on holiday.
The tactics through which American and French online contributors re-appropriated complexity were also influenced by national institutional perspectives on mental health. It was thus obvious that many online contributors on the French forum supported a biopsychosocial model of disease, which, as I mentioned in the previous chapter, was the dominant approach to mental healthcare in France up until the early 2000s, as they emphasized the need to tackle bipolar disorder by addressing it simultaneously as a biological, psychological, and social condition. In general, French contributors advocated an understanding of treatment effectiveness as not solely the result of the actions of the various chemical substances they took, but also of the various types of therapies and social support available. Furthermore, many of the additional therapies they suggested had a dialogical or interactional character, such as psychoanalytic approaches and eye movement desensitization and reprocessing therapy. While “talk” therapy or Alcoholics Anonymous (AA) meetings were often mentioned by American contributors, approaches focusing on dietary changes and on technological interventions, such as vagus nerve stimulation (VNS) and even electroconvulsive therapy (ECT), were by far more popular. At the same time, a pronounced overreliance on medications could be noted, which some of the blog contributors were aware and critical of:
You miss 1 day of your Seroquel, or your Cymbalta, or your Depakote… seriously, it will be okay… if not, use your psychotherapy techniques. Oh, that’s right… not too many actually do psychotherapy… it’s all the meds baby. (Mandy, May 12, 2011)
Overall, both American and French online contributors argued in favor of acknowledging a more diverse array of chemical interactions and practices as influencing treatment effectiveness. Personal preferences also informed the choice of therapeutic intervention, and they are discussed below.
People diagnosed with bipolar disorder creatively engaged with medical insights about individualization in treatment response to argue for the recognition of diverse personal preferences and leisurely pursuits as important influences on treatment effectiveness. For researchers, such variations refer to the identification of specific, small(er) groups sharing common molecular, environmental, and personal attributes. In contrast, online contributors often interpreted individualization so that each person’s health and illness trajectory became unique, which sometimes prompted them to argue against evidence derived from RCTs. In such instances, they advised others not to focus too much on statistics, but to bear in mind that the challenges they were facing were deeply personal and unlike those of anyone else.
In general, online contributors re-interpreted individualization to argue that lifestyle choices or leisurely activities which fell outside of the medical domain had therapeutic value, and often engaged in comparisons between their effects and those of medications, as the quote below illustrates:
Recently (I did something very random though less so for my brain), as I was coming out of a big depression, I went horse-riding, a great passion … well this session was the equivalent of an antidepressant and an anxiolytic, I was in the seventh heaven … Zen, feeling well … and this word ‘well’, we often look for it in our illness.
The therapeutic effect: it stimulates, it “zenifies”, it has an anti-depressant effect without a change of mood!
You and other bipolars shook me up, my shrink as well … but very frankly I didn’t want to listen… I had to find the “drive”, to set the machine in motion again…
For the moment I have found it again… and I am much better. (Sunset, Xeroquel, August 7, 2011)
This contributor seems to suggest that the pursuit of a hobby might be better than the categories of medications invoked, since its anti-depressive effects are not accompanied by the risk of mania or hypomania. The suggestion that leisurely pursuits have therapeutic effects is strengthened in the second part of the quote, where the state of well-being thus acquired is reported to be lasting. Other people diagnosed with bipolar disorder took up this suggestion and contributed to its development into a hypothesis, by reporting similar positive effects they were experiencing when engaging in their favorite activities, be they reading, cooking, or contributing on online platforms:
this blog and your collective experiences have been better for me than any medications as they usually have side-effects that are not welcomed. (Damian, February 25, 2014)
While these comments may indicate that the borders between the treatment and (self)management of a condition are rather porous for the people diagnosed with bipolar disorder studied here, only some of these digitally informed hypotheses have thus far coincided with scholarly interest. The last two quotes refer to practices that have been more successful from this point of view. For instance, whereas a focus on horses has been missing thus far in therapeutic approaches to bipolar disorder, this topic has received more attention over the last few years in relation to autism (Malcolm et al., 2018). Similarly, the idea that participation in online support communities would have positive effects on the well-being of a person diagnosed is the object of ongoing research. Whereas some of the results produced thus far have been inconclusive (Lagan et al., 2020; Naslund et al., 2016), others give some cause for hope that digital interactions with certified peer specialists can improve treatment outcomes in mental healthcare (Fortuna et al., 2019).
Unlike the contributors discussed above, another group of people diagnosed with bipolar disorder also re-interpreted individualization in treatment response by using the degree to which they could engage in activities that were meaningful to them as new and, arguably, more relevant standards to assess treatment effectiveness. In such instances, they went beyond considerations as to whether or not a certain medication stabilized their mood, and focused, instead, on the extent to which it allowed them to perform social roles, professional duties, or activities they enjoyed, be that the joy of interacting with their children, to fulfill their athletic aspirations, or to have a body image more aligned to their personal aesthetic ideals. Such accounts succeeded in rendering the effects of specific treatments “thick,” meaningful, understandable to people diagnosed as well as undiagnosed. In so doing, they helped others decide whether a certain medicine or therapeutic approach might be worth a try, based on similarities in life circumstances, hobbies, personal values, and preferences.
The identification of successful treatments according to such individualized standards was often accompanied by effusive displays of gratitude and appreciation:
I bless every day the medical team who discovered the effects of lithium, even though I’m suffering from its toxicity to the kidneys today, and I don’t regret having taken this treatment over a long period of time. I owe it the best years of life, calmer and more serene than I could have imagined. (honeysuckle, September 19, 2012)
As this quote indicates, such enthusiasm was not only reserved for medications with minimal side effects or where the side effects had not yet become apparent, but emerged as the result of a careful retrospective analysis. The accumulation of superlatives attached to the positively qualifying adjectives in the second sentence is illustrative of the ways in which affective markers functioned as indicators of the degree of confidence online contributors had in the effectiveness of medications. Unlike scientific accounts of treatment assessment which steer away from sentimentality and subjectivity, people diagnosed with bipolar disorder used sentimental effusions judiciously, but they did mobilize them for specific medications, to lend additional persuasive strength to their accounts about treatment effectiveness. Given that individual perceptions were accepted as reliable and authoritative by the other contributors, this reframing of individualization might contribute to heighten the epistemic relevance of emotional and affective personal markers in a field where authoritative knowledge has traditionally been acquired based on groups and the calculation of averages.
Other online contributors re-appropriated individualization to suggest that personality traits, one’s attitude toward treatment, and the level of personal commitment could impact on the effectiveness of medical treatment. Thus, in numerous comments the role of personal characteristics, such as risk aversion, tolerance, patience, and curiosity, on treatment response was seriously considered. This is, for instance, how a contributor made sense of the absence of positive effects the first time she took lithium:
I think the first time I wasn’t patient enough. I was expecting too much, too quickly. I don’t really know what it means to be balanced and I was expecting an influx of positive emotions. Until then I had only seen life in black, in gray … so I wanted to see it in pink, at least from time to time. Whereas normal life is not like that at all! And it’s true that I’m used to being constantly overwhelmed by emotions. I thrive on adrenaline. I think I have never known anything else, because the disease appeared too early. I don’t even know what it’s like to live normally … to live without having to struggle, without making any excesses. That’s why I didn’t think that I was that sick! By force of habit! (Annemarie, September 8, 2012)
This excerpt suggests that the performative effect of expectations (Engel & Van Lente, 2014) is also applicable when it comes to embodied experiences, as in Annemarie’s view, individuals need to be ready for certain medications and experienced enough to recognize when they are effective. Making the right decisions about treatment is thus not only understood as a matter of one’s mental and physical state, but also depends on the time of onset of the disease and the degree of self-knowledge that one had by then acquired, a point to which we will return in Chap. 5. Annemarie further points to an important element which informs treatment non-adherence among people diagnosed with bipolar disorder, as some of them enjoy their (hypo)manic states and have a hard time appreciating (clinical) stability, which they experience as a flattening of affect. It thus illustrates that lay expertise is not only a matter of acquiring vast experiential knowledge combined with medical insights, but that it also entails the capacity to manage one’s expectations, to acquire a better understanding of what living with bipolar disorder when receiving effective treatment can feel and look like.
Overall, online contributors mobilized individualization to provide insights meant to enable other people diagnosed with bipolar disorder to decide upon treatment, depending on their lifestyle preferences, on what they appreciated most about their existence and wanted to maintain, restore, or improve. They thus rendered the space of medical knowledge about treatment meaningful to them by inscribing in it elements and experience they found fulfilling. The implications of these findings are discussed below.
People diagnosed with mental health conditions have been actively engaged in their health for a long time. In a context where medical knowledge has permeated different areas of society, and has, thus, become amenable to multiple usages and interpretations, the Internet provides new avenues for them to exchange insights and to contribute to the production of knowledge. Using de Certeau’s (1988) theory of creative tactics it has been possible to show that people diagnosed with bipolar disorder develop more nuanced positions than challenging or accepting medical perspectives online, to take their insights and suggestions about treatment effectiveness seriously, and to approach them as productive exchanges which may lead to new knowledge. Thus, by mobilizing the notions of uncertainty, complexity, and individualization, online contributors sought to state the importance of individual experiences as epistemic resources, to put forward new factors influencing treatment effectiveness, and to advocate for an expansion of therapeutic interventions. In so doing, I have argued that they went beyond the performance of lay expertise and collectively developed “digitally informed hypotheses” about treatment effectiveness in an attempt to render the space of their interactions with medical professionals and of daily life with bipolar disorder more comfortable. The findings discussed in this chapter thus contribute to a substantial body of literature which has highlighted the value of blogs in providing people diagnosed with more tailored resources to navigate daily life (Adams, 2010) and the Internet’s ability to facilitate collective learning and the development of epistemic communities (Akrich, 2010).
The epistemic practices described here took place in a context marked by a broadening of the conceptualization of health-relevant data, as the growing number of wearable technologies people use and the digital traces they leave behind has made available tremendous amounts of information. Yet, unlike individuals who engage with digital self-tracking tools as “interpreters of the body” (Lupton, 2013), online contributors on the blog and forum studied relied upon other people diagnosed with bipolar disorder as their sounding board, as they made sense of the various states, moods, and other insights they collected dialogically. As we will discuss in more detail in Chap. 5, these activities support an understanding of such interactive online platforms as spaces for biosociality (Kingod, 2018), where contributors share their experiences and the creative practices they develop to better manage their conditions (Pols, 2014). The design and affordances of blogs and fora importantly shaped the development of “digitally informed hypotheses,” as the coordination required for such epistemic practices was facilitated through the repetition, accumulation, and visibility of particular ideas over extended periods of time that they allowed for. The fact that information from different years can be located in the same place has, however, potential drawbacks, as proximity on the blog or forum might obliterate important contextual factors, and unreflectively equate experiences shaped by specific temporal and social coordinates. This may have negative consequences for the reliability of the inferences made based on such insights, as they may lack internal consistency, but also on their validity, since elements that are important to correctly interpret the data used are missing or not taken into consideration. While the de-contextualized use of data is already common in data analytics, many scholars have warned against the consequences such practices may have upon the quality of the scientific claims inferred from them and about the societal transformations they may lead to (Gregory et al., 2019; Prainsack, 2017; Wyatt et al., 2013).
Through their comments, contributors showed that the effects of medications do not manifest themselves in pristine laboratory conditions but occur in the messy context of daily life of people with the same diagnosis, but perhaps with different symptoms, bodily reactions, needs, and preferences. They also suggested that the effects and side effects of medications are shaped by the specific circumstances of the lives they act upon, and such knowledge is still insufficient at the medical level. While the recommendations of medical professionals are based on evidence obtained in conditions where high levels of validity and reliability can be guaranteed, the online interactions between people diagnosed with bipolar disorder indicate that they often value insights acquired through the accumulation of personal accounts, whose reliability is indicated through detailed descriptions and the presence of affective and emotional markers next to medical information. These perspectives are in line with findings which suggest that medical professionals and people diagnosed have contrasting views on knowledge and validity (Bellander & Landqvist, 2018), and which argue that “[t]he epistemic authority of the patient’s experience as a source of knowledge emerges not in spite, but precisely because, of its highly emotive and embodied dimensions” (Mazanderani, 2014:141).
The comparison of the tactics through which American and French online contributors re-appropriated medical uncertainty, complexity, and individualization as treatment response revealed important similarities and differences. Both French and American online contributors engaged in online exchanges to achieve specific pragmatic goals, as they tried to identify more suitable treatments for themselves depending on their lifestyle and personal preferences, to expand the meaning of treatment to include various practices, or to consider its effects in interaction with a more complex array of substances and activities. They also tried to acquire more agency in their interactions with medical professionals by having their experiences confirmed by many others. The analysis further indicated that cultural, social, and institutional differences importantly shape online contributions, leading to noteworthy distinctions. More cross-cultural studies on the treatment experiences of people diagnosed with bipolar would be highly valuable, as they would cast light upon important similarities and differences in reactions hitherto considered as mainly biological, and may reveal what factors inform them.
While this chapter discussed how people diagnosed with bipolar disorder contributed collectively to the development of new insights about treatment effectiveness, the next one will show that the ideal of active patienthood combined with the skillful use of the Internet and an entrepreneurial spirit can render some individuals diagnosed with bipolar disorder highly influential. One of these individuals is Natasha Tracy, who in this chapter received limited attention as the owner of the blog from which data were collected, but who will come into the limelight due to another position she occupies and a more substantial engagement in expertise about bipolar disorder.
I was inspired to use the term “hypothesis” by some French online contributors, who used this notion to describe a suggestion regarding the effects of certain environmental factors on treatment effectiveness put forward by other people diagnosed with bipolar disorder on the forum Le Forum des Bipotes.
Adams, S. (2010). Blog-based Applications and Health Information: Two Case Studies That Illustrate Important Questions for Consumer Health Informatics (CHI) Research. International Journal of Medical Informatics, 79, 89–96.
Adams, S. (2011). Sourcing the Crowd for Health Services Improvement: The Reflexive Patient and “Share-Your-Experience” Websites. Social Science & Medicine, 72(7), 1069–1076.
Akrich, M. (2010). From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet. Sociological Research Online, 15(2), 10. Available at http://www.socresonline.org.uk/15/2/10.html
Arksey, H. (1994). Expert and Lay Participation in the Construction of Medical Knowledge. Sociology of Health & Illness, 16(4), 448–468.
Baillergeau, E., & Duyvendak, J. W. (2016). Experiential Knowledge as a Resource for Coping with Uncertainty: Evidence and Examples from the Netherlands. Health, Risk & Society, 18(7–8), 407–426.
Bates, S. (2010). Progress Towards Personalized Medicine. Drug Discovery Today, 15(3), 115–120.
Bearden, C., Thompson, P., Dalwani, M., Hayashi, K., Lee, A., Nicoletti, M., & …Soares, J. (2007). Greater Cortical Gray Matter Density in Lithium-Treated Patients with Bipolar Disorder. Biological Psychiatry, 62(1), 7–16.
Bellander, T., & Landqvist, M. (2018). Becoming the Expert Constructing Health Knowledge in Epistemic Communities Online. Information, Communication & Society, 23(4), 507–522. https://doi.org/10.1080/1369118X.2018.1518474
Blommaert, J. (2005). Discourse: A Critical Introduction. Cambridge University Press.
Borkman, T. (1976). Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups. Social Service Review, 50(3), 445–456.
Britten, N., & Maguire, K. (2016). Lay Knowledge, Social Movements and The Use of Medicines: Personal Reflections. Health, 20(2), 77–93.
Collin, J. (2015). Universal Cures for Idiosyncratic Illnesses: A Genealogy of Therapeutic Reasoning in the Mental Health Field. Health, 19(3), 245–262.
Collins, H., & Evans, R. (2002). The Third Wave of Science Studies. Studies of Expertise and Experience. Social Studies of Science, 32(2), 235–296.
Collins, H., & Evans, R. (2007). Re-thinking Expertise. Chicago: The University of Chicago Press.
Collins, F., & Varmus, H. (2015). A New Initiative on Precision Medicine. New England Journal of Medicine, 372(9), 793–795.
Craddock, N., & Sklar, P. (2013). Genetics of Bipolar Disorder. The Lancet, 381, 1654–1662.
Davidson, L. (2005). Recovery, Self Management and the Expert Patient- Changing the Culture of Mental Health from a UK Perspective. Journal of Mental Health, 14(1), 25–35.
de Certeau, M. (1988). The Practice of Everyday Life. University of California Press.
De Leon, J. (2012). Evidence-based Medicine Versus Personalized Medicine: Are They Enemies? Journal of Clinical Psychopharmacology, 32, 153–164.
Engel, N., & Van Lente, H. (2014). Organizing Innovation and Control Practices: The Case of Public-Private Mix in Tuberculosis Control in India. Sociology of Health and Illness, 36(6), 917–931.
Epstein, S. (1995). The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Science, Technology & Human Values, 20(4), 408–437.
Epstein, S. (1996). Impure Science: AIDS, Activism, and the Politics of Knowledge. University of California Press.
Felt, U. (2015). Sociotechnical Imaginaries of “the Internet”, Digital Health Information and the Making of Citizen-Patients. In S. Hilgartner, C. Miller, & R. Hagendijk (Eds.), Science and Democracy: Making Knowledge and Making Power in the Biosciences and Beyond (pp. 176–197). Routledge.
Forlenza, O., De-Paula, V., & Diniz, B. (2014). Neuroprotective Effects of Lithium: Implications for the Treatment of Alzheimer’s Disease and Related Neurodegenerative Disorders. ACS Chemical Neuroscience, 5(6), 443–450.
Fortuna, K., Brook, J., Umucu, E., Walker, R., & Chow, P. (2019). Peer Support: A Human Factor to Enhance Engagement in Digital Health Behavior Change Interventions. Journal of Technology in Behavioral Science, 4, 152–161.
Frank, R., Conti, R., & Goldman, H. (2005). Mental Health Policy and Psychotropic Drugs. The Millbank Quarterly, 83(2), 271–298.
Freidson, E. (1970). The Profession of Medicine. Harper and Row.
Frey, B., Andreazza, A., Houenou, J., Jamain, S., Goldstein, B., Frye, M., et al. (2013). Biomarkers in Bipolar Disorder: A Positional Paper from the International Society for Bipolar Disorders Biomarkers Task Force. Australian & New Zealand Journal of Psychiatry, 47(4), 321–332.
Geddes, J., & Goodwin, G. (2001). Bipolar Disorder: Clinical Uncertainty, Evidence-Based Medicine and Large-Scale Randomised Trials. The British Journal of Psychiatry, 178(S41), 191–194.
Gregory, K., Cousijn, H., Groth, P., Scharnhorst, A., & Wyatt, S. (2019). Understanding Data Search as a Socio-Technical Practice. Journal of Information Science, 46, 1–17. https://doi.org/10.1177/0165551519837182
Han, P. (2013). Conceptual, Methodological, and Ethical Problems in Communicating Uncertainty in Clinical Evidence. Medical Care Research and Review, 70(1), 14–36.
Hardey, M. (1999). Doctor in the House: The Internet as A Source of Lay Health Knowledge and the Challenge to Expertise. Sociology of Healthy & Illness, 21, 820–835.
Harrison, P., Cipriani, A., Harmer, C., Nobre, A., Saunders, K., Goodwin, G., & Geddes, J. (2016). Innovative Approaches to Bipolar Disorder and Its Treatment. Annals of the New York Academy of Sciences, 1366(1), 76–89.
Healy, D. (2008). Mania: A Short History of Bipolar Disorder. John Hopkins University Press.
Hedgecoe, A., & Martin, P. (2003). The Drugs Don’t Work. Social Studies of Science, 36, 723–752.
Herring, S. (2012). Discourse in Web 2.0.: Familiar, Reconfigured, and Emergent. In D. Tannen & A. Tester (Eds.), Georgetown University Round Table on Languages and Linguistics 2011: Discourse 2.0.: Language and new media (pp. 1–29). Georgetown University Press.
Hogle, L. (2016). Data-intensive Resourcing in Healthcare. BioSocieties, 11(3), 372–393.
Khoury, M., Berg, A., Coates, R., Evans, J., Teutsch, S., & Bradley, L. (2008). The Evidence Dilemma in Genomic Medicine. Health Affairs, 27(6), 1600–1611.
Kingod, N. (2018). The Tinkering M-Patient: Co-Constructing Knowledge on How to Live with Type I Diabetes Through Facebook Searching and Sharing and Offline Tinkering with Self-Care. Health, 1–17.
Lagan, S., Ramakrishnan, A., Lamont, E., Ramakrishnan, A., Frye, M., & Torous, J. (2020). Digital Health Developments and Drawbacks: A Review and Analysis of Top-Returned Apps for Bipolar Disorder. International Journal of Bipolar Disorders, 8(39), 1–8.
Lakoff, A. (2005). Pharmaceutical Reason. Knowledge and Value in Global Psychiatry. Cambridge University Press.
Levin, J., Krivenko, A., Howland, M., Schlachet, R., & Sajatovic, M. (2016). Medical Adherence in Patients with Bipolar Disorder: A Comprehensive Review. CNS Drugs, 30(9), 819–835.
Lupton, D. (2013). Quantifying the Body: Monitoring and Measuring Health in the Age of mHealth Technologies. Critical Public Health, 23(4), 393–403.
Lupton, D. (2016). The Quantified Self. A Sociology of Self-Tracking. Polity Press.
Lupton, D. (2018). Digital Health. Routledge.
Lupton, D. (2020). Data Selves. Polity Press.
Machado-Vieira, R., Manji, H., & Zarate, C. (2009). The Role of Lithium in the Treatment of Bipolar Disorder: Convergent Evidence for Neurotrophic Effects as a Unifying Hypothesis. Bipolar Disorder Suppl., 2, 92–109.
Malcolm, R., Ecks, S., & Pickersgill, M. (2018). ‘It just opens up their world’: Autism, Empathy, and the Therapeutic Effects of Equine Interactions. Anthropology & Medicine, 25(2), 220–234.
Martin, E. (2009). Bipolar Expeditions. Mania and Depression in American Culture (2nd ed.). Princeton University Press.
Mazanderani, F. (2014). The Patient’s View: Perspectives from Neurology and the ‘New’ Genetics. Science as Culture, 23(1), 135–144.
McLean, A. (2003). Recovering Consumers and a Broken Mental Health System in the United States: Ongoing Challenges for Consumers/Survivors and the New Freedom Commission on Mental Health. International Journal of Psychosocial Rehabilitation, 8, 58–70.
Miziou, S., Tsitsipa, E., Moysidou, S., et al. (2015). Psychosocial Treatment and Interventions for Bipolar Disorder: A Systematic Review. Annals of General Psychiatry, 14(19), 1–11.
Morrison, L. (2013). Talking Back to Psychiatry. The Psychiatric Consumer/Survivor/Ex-Patient Movement. Routledge.
Naslund, J., Aschbrenner, K., Marsch, L., & Bartels, S. (2016). The Future of Mental Health Care: Peer-To-Peer Support and Social Media. Epidemiology and Psychiatric Sciences, 25(2), 113–122.
Naylor, S., & Chen, J. (2010). Unraveling Human Complexity and Disease with Systems Biology and Personalized Medicine. Personalized Medicine, 7(3), 275–289.
Petersen, A., & Lupton, D. (1996). The New Public Health. Health and Self in the Age of Risk. Sage.
Plsek, E., & Greenhalgh, T. (2001). Complexity Science: The Challenge of Complexity in Health Care. BMJ, 323, 625–628.
Pols, J. (2014). Knowing Patients: Turning Patient Knowledge into Science. Science, Technology & Human Values, 39(1), 73–97.
Prainsack, B. (2017). The “We” in the “Me”: Solidarity and Health Care in the Era of Personalized Medicine. Science, Technology, & Human Values, 43(1), 21–44.
Prior, L. (2003). Belief, Knowledge and Expertise: The Emergence of the Lay Expert in Medical Sociology. Sociology of Health & Illness, 25, 41–57.
Rose, N. (2018). Our Psychiatric Futures. Polity Press.
Sachs, G. (2004). Strategies for Improving Treatment of Bipolar Disorder: Integration of Measurement and Management. Acta Psychiatrica Scandinavica, 110(S422), 7–17.
Schork, N. (2015). Personalized Medicine: Time for One-Person Trials. Nature, 520, 609–611.
Segall, A., & Roberts, L. (1980). A Comparative Analysis of Physician Estimates and Levels of Medical Knowledge Among Patients. Sociology of Health & Illness, 2(3), 317–334.
Sharon, T. (2015). Healthy Citizenship Beyond Autonomy and Discipline: Tactical Engagements with Genetic Testing. BioSocieties, 10(3), 295–316.
Sosnowy, C. (2014). Practicing Patienthood Online: Social Media, Chronic Illness, and Lay Expertise. Societies, 4, 316–329.
Squassina, A., & Pisanu, C. (2013). Personalized Medicine in Bipolar Disorder: How Can We Overcome the Barriers to Clinical Translation? Personalized Medicine, 10(8), 765–768.
Tanaka, E., & Hisawa, S. (1999). Clinically Significant Pharmacokinetic Drug Interactions with Psychoactive Drugs: Antidepressants and Antipsychotics and the Cytochrome P450 System. Journal of Pharmacy and Therapeutics, 24(1), 7–16.
Thomas, P. (2016). Psycho Politics, Neoliberal Governmentality and Austerity. Self & Society, 44(4), 382–393.
Thompson, J., Bissell, C., Cooper, C., Armitage, C., & Barber, R. (2012). Credibility and the “Professionalized” Lay Expert: Reflections on the Dilemmas and Opportunities of Public Involvement in Health Research. Health, 16(6), 602–618.
Tighe, S., Mahon, P., & Potash, J. (2011). Predictors of Lithium Response in Bipolar Disorder. Therapeutic Advances in Chronic Disease, 2, 209–226.
Versteeg, W., Te Molder, H., & Sneijder, P. (2018). “Listen to Your Body”: Participants’ Alternative to Science in Online Health Discussions. Health, 22(5), 432–450.
Weber, G., Mandl, K., & Kohane, I. (2014). Finding the Missing Link for Big Biomedical Data. JAMA, 311(24), 2479–2480.
Wilcox, S. (2010). Lay Knowledge: The Missing Middle of the Expertise Debates. In R. Harris, N. Wathen, & S. Wyatt (Eds.), Configuring Health Consumers. Health Work and the Imperative of Personal Responsibility (pp. 45–64). Palgrave Macmillan.
Wyatt, S., Harris, A., Adams, S., & Kelly, S. (2013). Illness Online: Self-Reported Data and Questions of Trust in Medical and Social Research. Theory, Culture & Society, 30(4), 131–150.
Young, A., & Newham, J. (2006). Lithium in Maintenance Therapy for Bipolar disorder. Journal of Psychopharmacology, 20(2), 17–22.
Ziegelstein, R. (2015). Personomics. The Journal of the American Medical Association Internal Medicine, 175(6), 888–889.
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Egher, C. (2023). Tactical Re-appraisals and Digitally Informed Hypotheses About the Treatment for Bipolar Disorder. In: Digital Healthcare and Expertise. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-16-9178-2_4
Publisher Name: Palgrave Macmillan, Singapore
Print ISBN: 978-981-16-9177-5
Online ISBN: 978-981-16-9178-2