Study Explores Meanings of Bipolar Disorder to Those Diagnosed

Researcher Anika Mandla and colleagues investigated how individuals who identify with the diagnosis of Bipolar disorder (BD) understand their diagnosis. In this featured study, internet blogs authored by people who characterize themselves as “bipolar” were analyzed, and results were interpreted to demonstrate that as definitions of BD broaden, normal behaviors are increasingly at risk for being rendered atypical by providers and patients alike.

“The accounts provide support for the notion that advertising can change the way that people think about the nature of human experience,” Mandla writes, “modeling a view of selfhood as mediated by brain chemistry and exemplifying Rose’s ‘neurochemical selves.’”

Bipolar disorder (BD) as a mental disorder has been subject to considerable debate within the field. This study investigates how the general public and those diagnosed understand the condition. Early derivations of BD constructs such as “manic depression” were said to be identifiable by practitioners simply because it manifests in behavior that is distinctly out of character, meriting compulsory hospitalization.

More recently, however, BD definitions have expanded and increased in fluidity, encompassing a variety of possible diagnostic labels including Bipolar I, Bipolar II, Bipolar Spectrum Disorder, and “subthreshold BD.” While sources do not distinguish one from the other, each construct conforms to the idea that BD is a brain disease, a chemical imbalance, write the researchers.

As the boundary of BD expands, prevalence rates have increased. The authors cite leading bipolar researchers who have suggested that around a quarter of the population is likely affected by BD. While some see these shifting definitions as a mark of progress and greater detection of previously unrecognized forms of BD, others maintain fear that these suggestions do not make substantiated delineations between “normal” behaviors and “diseased” ones. Some contend that overdiagnosis of BD has corresponded with the increasing fluidity and vagueness characterizing the diagnosis.

“Evidence indicates that BD is increasingly replacing other diagnoses, particularly forms of personality disorder, and sometimes applied to problems that would previously not have received any diagnosis,” write the authors.

Viewed by many as a “serious and chronic mental illness,” receiving a diagnosis of BD comes with it the potential to dictate future opportunities in life, encounters with the health system, and, if taking recommended drugs, significant adverse side effects (diabetes, weight gain, and cognitive impairments).

Because the internet tends to be a go-to resource for many about the nature of BD, the researchers sought to understand better how the construct is described through these internet blogs. Such an investigation may perhaps offer a new perspective in the midst of mixed discourses within the field. Mandla and researchers explain:

“The fact that people are more likely to search for information about their problems on the Internet rather than going to a health professional (Fox & Rainie, 2002) suggests that blogs about health conditions may have an important influence on how these conditions are perceived more generally.”

They continue to hypothesize, however, that discourses rendering BD like states as a medically reified entity might be influencing internet bloggers in other ways:

 “The influence of the Internet on the understandings of BD may be reflected by the evidence that people are increasingly seeking to be diagnosed with BD (Chan & Sireling, 2010), sometimes citing the Internet as an instigating factor (Strudwick, 2012).”

Researchers conducted an internet search using the term “Bipolar disorder blog” through Google from the UK on March 2, 2015. Approximately 80 blogs that had been written by individuals self-identifying with the BD label were reviewed. The blogs were analyzed using thematic analysis, in which, researchers identified themes and patterns across the written accounts in correspondence with, but not limited to, the following questions:

1. What problems (or symptoms) do people regard as being part of BD?
2. How do people view having or getting a diagnosis of BD?
3. What do people believe are the causes of BD?
4. What are people’s experiences of, and views about the treatment of BD?

Results were categorized into prevailing domains and subthemes to answer the broad research question of how bloggers understood BD in addition to the above, specific questions. Forty-five blogs were ultimately selected for analysis, including 22 different bloggers and 12 different websites. From the information gathered, bloggers resided in the US, one was from South Africa, and the rest were unknown. Fifteen bloggers specified that they were female, four male, and the rest were unknown. Ages ranged from 35 to over 50 years old.

Domain 1: The nature of BD

Results found that bloggers described the nature of BD as the experiencing of intense and fluctuating emotions. They emphasized that these experiences were beyond the scope of those considered to be “normal” and involved a wide array of different problems and emotions such as anger, depression, anxiety, hallucinations, substance use, suicidal behavior, “erratic behavior,” interpersonal problems, difficulty at work, and insomnia.

While all bloggers identified with the BD description, the extent to which they understood it as an intrinsic part of themselves varied from blog to blog. One blogger writes: “I had a monster within me that had taken up residence. At times the monster was quiet and I would actually forget that it was “there” … Managing the monster was exhausting … And my greatest fear was that I WAS the monster.”

Another describes their experience of BD in the following way: “The bipolarity is me. The poles, the zero to the 100% on the scale are what I am, who I am, who I have always been.”

In other instances, desirable qualities of BD were embraced as a part of bloggers’ personalities. For example, writing, “I built my identity on being the super energetic, extremely empathic, driven, passionate person.”

“We’re able to grasp seemingly paradoxical ideas; think laterally; connect the dots between antithetical concepts … In my mildly hypo-manic phases, I’m more intuitive; I have the energy to do things and the focus to complete them.”

The researchers additionally note that BD was invoked by bloggers to “explain moral issues or perceived failures,” such as in the following text: “I was in this manic state, and I affected a lot of my closest loved ones in a negative way by being irritable, loud, super confident, defensive and insensitive.”

Domain 2: Diagnosis

Mandla and researchers write that “many bloggers exhibited a sense of desperation to be labeled with BD.” One blogger wrote:

“Initially I was punching the air. For months I have fought to get the stamp: the confirmation that my behavior is more than just me being deliberately difficult, that it was more than just recurrent depressive disorder coupled with anxiety and mere bipolar tendencies …”

The researchers describe many bloggers as presenting “the events of their lives as a ‘story’ leading up to diagnosis. They describe years of struggling with difficulties at school and work, relationship problems, substance misuse, self-harm, depression, etc. Being officially diagnosed with BD is the final event of the ‘story’ that retrospectively transforms past events and provides a new outlook on the current problems.”

One blogger contended that things had been different since their diagnosis. As a result, bloggers described a need to continually self-monitor their moods, emotions, and behaviors.

Domain 3: Causes

BD was commonly referred to as a disorder of the brain. Bloggers described the idea of being “wired differently” and some used terms such as “bipolar brain.” Similarly, many referred to the root cause as being one of a chemical imbalance. The researchers describe this theme:

“Reflecting promotional and informational messages, bloggers also explained how they thought that chemical imbalances could be rectified with medication: ‘This is where medications can help. These chemical and neurological imbalances and activity can be influenced chemically, and reduce the severity of symptoms.’”

In addition to this, bloggers typically described episodes occurring in response to stressors such as family problems, work, academic stressors, and physical pain. One blogger writes:

“As the peak season approached, and stress increased, I started a 2-week hypomanic stretch … Each time, I learn more about what may have caused it (in these cases, stress, both mental and physical, is a major factor!).”

Domain 4: Treatment

Of the bloggers who specified that they were taking medication for BD, more than half viewed their experience positively while the rest were split between negative and mixed reviews. Those with positive reviews endorsed beliefs that BD was amenable to medication. Most specified that they had been using it for a long time and believed that they would require the prescription for the rest of their lives, writing, “It will shape the rest of my life as it has shaped my history.”

Many bloggers were taking more than one drug to address BD. “For some, there appeared to be a belief that a large cocktail of medication was required to address the complex nature of the underlying chemical disturbance. Getting the ‘right combination’ could be a lengthy and challenging process, however, with many bloggers taking years to find it,” write Mandla and team.

Sometimes, bloggers referred to their prescribers as “Dr. Candyman” or “Dr. Awesomesauce.” The researchers comment on this with their tentative interpretation:

“The names suggest that bloggers perceived doctors as being principally a source of medication, maybe implying an overreadiness to prescribe. They may also indicate that bloggers valued the direct, mind-altering effects of medication in the same way that people seek out effects of drugs like Valium or amphetamines.”

Other bloggers expressed their disappointment that medication did not prove helpful for them. Some of the individuals who found it to be ineffective also found it to be harmful: “Here I am, stoned out of my mind, a constant general malaise, and barely able to function.” In another instance, a blogger found that coming off of medication restored her sense of agency and happiness:

“Once the fog of medication started to dissipate, I realized the people and activities I surrounded myself with were no longer enough to sustain my growth and new state of consciousness. So I made the decision to leave my marriage and separate myself from the vast majority of the people and activities I had once given all my time and energy to.”

Finally, bloggers offered alternative ideas and activities that they engaged in to manage their condition including yoga, meditation, spending time in nature, listening to music, and other such activities including “addressing the source of the stress, including problems with jobs and relationships.”

Mandla concludes that BD is presented on the internet consistently with broad definitions and understandings of BD rather than the initial, narrow construct initially put forth when manic depression was introduced. They interpret these findings as consistent with the literature which outlines how the BD diagnosis is now being used in cases that would have previously been understood as depression, anxiety, substance misuse, and personality disorders.

Furthermore, the researchers found that the bloggers’ recounting of their experienced mirrored that of the discourses supported by drug companies:

“Bloggers’ views were consistent with ideas presented on drug company websites, particularly bloggers’ beliefs they had an illness, their acceptance of the chemical imbalance explanation, and the search for the right combination of medications.”

Moreover, Mandla and team highlight how bloggers understood BD as a separate entity, serving a way to displace or cast out accounts of moral failings, whereas bloggers’ intelligence and empathy were regarded as essential personality features. Similar patterns of reifying negative elements of life stories and attributes as disease entities are exemplified in people who identify with adult ADHD and depression, they note.

“It seems that whatever the status of BD within the academic circles, there is a public view of BD as a broad concept that can encompass a wide variety of problems, has fluid boundaries with normality and fulfills a moral function. Clinicians need to be aware that what patients regard as BD may not correspond to the conditions for which the drug treatment has been tested.”

 

 

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Mandla, A., Billings, J., & Moncrieff, J. (2017). “Being Bipolar”: A Qualitative Analysis of the Experience of Bipolar Disorder as Described in Internet Blogs. Issues in mental health nursing, 38(10), 858-864. (Link)