Regarding participants, all were over 18 years of age, legally competent, and self-declared as diagnosed with Bipolar Disorder (BD). One Focus Group (FG) member reported that their diagnosis was still under investigation, but according to their psychiatrist, the clinical picture suggests BD. All participants were undergoing medication treatment for the clinical condition under study. No further distinctions were made based on sex, education, family income, or geographic region of residence. A certain homogeneity was observed in terms of age range, with diagnosis established at an average age of 22.8 years, except for one participant, who was diagnosed in childhood, around seven years of age. Participant G3 was not considered for this average, as their diagnosis has not been fully established. Most participants were diagnosed by a psychiatrist, with only one participant receiving the same diagnosis from a psychologist (i4). Regarding gross family income, four participants had an income between three and four minimum wages (R$3.636,00 to R$4.848,00), two between five and ten minimum wages (R$6.060,00 to R$12.120,00), two had incomes above ten minimum wages (> R$12.120,00), two between one and two minimum wages, and one did not report gross family income as they did not respond to the Google® form. In terms of education, four participants had not completed higher education, five had completed higher education, and two had completed a stricto sensu graduate program, with one holding a master’s degree and one holding a doctoral degree.

An interview guide was prepared by the authors, with questions designed to steer both individual semi-structured interviews and the focus group.

The primary strategy for inviting participants was through the distribution of a Google® Form, through which 17 individuals indicated their willingness to participate in either a group and/or an individual interview. Two participants were directly invited by the researchers (AFSAN, AFRF) via remote contact. Subsequently, when contact was made to schedule the interviews, only 10 individuals agreed to participate. Initially, seven individual interviews were conducted. Upon observing sufficient content density and an absence of new information related to the experience under study, only two additional interviews were conducted to confirm data saturation. The researchers determined that data saturation had been reached and did not invite further participants for the study (Bauer & Gaskell, 2008). Thus, a total of nine individual interviews and one FG with three members were conducted, with one person participating in both interview formats.

For data collection, the semi-structured interview technique was used, with a single interview guide. Participants signed the Informed Consent Form (ICF) in advance. Interview audio recordings were made and subsequently transcribed. The online transcription software Reshape® was used for four individual interviews; the remaining interviews were manually transcribed by the first author. The two interview techniques complemented each other: the individual interviews allowed each participant to narrate their experience in detail, while the focus group facilitated dialogue and interaction among members regarding shared experiences. The literature indicates that FGs can be highly beneficial in phenomenological research; this technique was successfully employed in the study by Love et al. (2020), as it made it possible to grasp understandings and narratives, as well as ideographic identities. Furthermore, according to Bradbury-Jones et al. (2009), FGs enhance data credibility and positively contribute to the interactional context promoted by the group setting.

After transcription, the data were processed using thematic analysis. Initially, a preliminary analysis was conducted using an Excel® spreadsheet. Subsequently, the data were coded, a process that involves dividing the data into themes and sub-themes, thereby revealing the structure of the phenomenon studied (van Manen, 1990). To facilitate and organize the analysis work, NVivo 14® software was used

Regarding ethical aspects, this study is part of a larger project: “Clinical, economic, humanistic, cultural, and educational outcomes of medication therapy management services in the Brazilian Unified Health System”, which received approval from the Research Ethics Committee of the Universidade Federal de Minas Gerais (UFMG, Federal University of Minas Gerais) on May 28, 2014, under registration CAAE-25780314.4.0000.5149.

Bipolar disorder is primarily associated with mood variation between stages of depression and euphoria; however, the symptomatology is highly complex. Participants’ accounts highlight mood swings involving discouragement, somnolence, reactivity, impatience, aggressiveness, agitation, impulsivity, a sense of superiority, and other symptoms, in addition to the challenges faced before and after the diagnosis was established.

For i6, upon first diagnosis of depression and being prescribed many medications simultaneously made the acceptance process even more difficult, as it brought a pessimistic outlook; while depression could potentially be cured, BD is a chronic condition. In the case of i6: “It was quite difficult (...). The depression diagnosis was already hard to accept, but finding out it was bipolar disorder was even worse, because, with depression at least, I thought I would improve and could stop taking the medication”.

Although i9 has been stable for three years without any current complaints, this participant faced difficulties, as the initial diagnoses were Attention Deficit Disorder with Hyperactivity (ADHD) and panic disorder, leading to inadequate treatments that exposed her to severe adverse side effects.

Upon receiving the diagnosis of BD, the experiences involved negative feelings such as fear, embarrassment, and denial. Difficulty in accepting the diagnosis mainly arises because it is deemed a chronic mental health condition. In the words of i1: “You carry the diagnosis and the use of medication with you for the rest of your life”. And according to i3: “(...) I know it’s cyclical, that it will happen, that I am in treatment, but I would rather not go through this. There is also stigma, as people start to look at you differently”.

For i8, receiving the diagnosis and starting medication use was traumatizing. The participant reported that their psychiatrist did not fully understand their concerns and struggles at that time: “The doctor said: ‘Look, I don’t understand why you’re complaining about taking medication because, in the past, treatments consisted of electroshock chairs’. That day, I felt like I was losing my dreams!”

In the case of i7, the parents kept the BD diagnosis a secret, only disclosing it to them in adulthood. Regarding this discovery, i7 said, “The diagnosis explained all the behavioral oddities of my entire life, since adolescence”. Despite his optimistic outlook, he recounted the incident with regret, believing that if he had known from the start, he would have been more confident and would not have stopped taking the medication for 10 years.

Feelings of uncertainty permeated FG discussions regarding the diagnosis and medication treatment. Participant G3 reported that her diagnosis of BD has not yet been finalized, and her condition is still being evaluated by a psychiatrist, although there is strong evidence supporting the disorder. Participant G2 has an established diagnosis, yet due to his instability, the psychiatrist is reevaluating the case, and he is undergoing adjustments in pharmacotherapy.

For other participants in this study, receiving a BD diagnosis was viewed positively, as it provided relief and a sense that their experiences, symptoms, behaviors, and reactions made sense, had an explanation, and were shared by others.

The treatment process is permeated by subjectivity, which must be considered for mental health recovery. The dosages needed for the medication to be effective are unique and pose a challenge to objectivity, with each participant reporting the need to adapt to different prescriptions and dosages. G1’s initial experience with lithium was negative, but she is now adjusted to the medication, maintaining the same dosage and formulation, despite experiencing some side effects. For G1, lithium has been the most effective treatment thus far, while G2 had a terrible experience with the same medication. Participant G3 takes valproic acid, which makes her “communicative, though not excessively euphoric, facilitating social interaction”.

To illustrate the difficulty of treating BD, G1 offered a comparison:

Participant G1, although noting that lithium has been the most suitable among the medications used so far, is unsure if the symptoms of nausea and fatigue she is experiencing are related to the medication. Participant G2, on the other hand, mentions valproic acid as the most effective medication but is also experiencing instability, raising doubts about the treatment.

The difficulty of managing BD to achieve stability is clearly evident in the data analysis, encompassing the journey from overcoming severe and successive crises to reaching stability. The process of finding the “middle ground” and achieving mood balance was extensively discussed in the FG as a consensus point. Participant G2 reported experiencing an internal struggle during a crisis, as manic or hypomanic episodes often emerge at the peak of depression: “One curious thing is that my manic episodes arise... many are triggered at the height of my depression. It’s as though I’m so depressed that my other side surfaces”. They perceive themselves as divided into two poles, each battling to take control.

Following this account, which all other participants agreed with, G1 drew a comparison to Lewis Carroll’s Alice in Wonderland:

The recollection of this scene from a fictional work engaged all participants and resonated with them, fostering interaction. In the story, Alice eats the cake and grows large, drinks the potion and shrinks, and there’s a key to open the door. Participant G2 added:

The pharmacotherapeutic management has undergone adjustments over time for all participants until an ideal prescription was reached. To achieve this, trials with different medications were conducted. Symptom improvement was therefore gradual. Participant i9 described this process as a “half-dead snake”. This term refers to the difficulty and slowness in resolving a problem, used here as an analogy for the participant’s path to stability, even after finding success with carbamazepine.

Meanwhile, i2, who had not yet reached full stability, described treatment resistance and the need for frequent dosage adjustments within the same month: “(...) I basically tried all the medications, with no result. Medications were ineffective; I used one, then another, without success, then switched again”.

Currently, i1 reported finding success with risperidone, but reaching stability with this medication required approximately one year of adapting to the side effect of emotional indifference.

Access to pharmacogenetic testing made a difference for participant i9. Her experience contrasts with the other participants who did not undergo this test; carbamazepine was selected for them based on test results and proved effective, as no further medication changes were needed, only dose adjustments, thereby shortening the path to stability.

Most participants presented comorbidities, including ADHD, anxiety, diabetes mellitus, hypothyroidism, thrombophilia, panic disorder, and restless legs syndrome. This posed a challenging situation for both individuals affected and professionals managing BD, as medication reconciliation was necessary. Reports indicate that i8’s hypothyroidism and i2’s diabetes mellitus were caused by chronic use of lithium and clozapine, respectively. Prolonged lithium use led i8 to develop thyroid issues, requiring hormone replacement with levothyroxine. Participant i7 reported difficulties reconciling medications for BD and ADHD, as lisdexamfetamine and methylphenidate tend to trigger manic or hypomanic episodes.

Participants in this study described behaviors such as excessive work/activity, lack of quality sleep, excessive alcohol consumption, overuse of legal stimulants like coffee and energy drinks, illicit drug use, routine changes, or discontinuation of medication. Excessive alcohol use by i1, i5, i6, and i7 negatively impacted their routine and treatment adherence. Participant i5, for instance, often prioritizes recreational moments involving alcohol, temporarily halting prescribed medication, which affects stability.

Suicidal ideation and suicide attempts emerged as life-threatening risks for i1, i5, i6, i7, and i9, associated more with depressive episodes and less with manic episodes. The depressive episode experienced by i7 led to the planning and execution of a suicide attempt (SA), resulting in hospitalization, while i6’s SA required urgent care. According to i7: “And then I started to get very, very, very depressed. And had suicidal ideation. This was at the end of last year. In late September, I attempted suicide. This triggered despair in my parents”.

Suicidal ideation was present in i5’s mind before medication use: “I’ve always been a sensitive person. Commonly sensitive. But without being medicated, before treatment, everything hurt too much. Living was too painful. I had episodes of suicidal ideation”.

The participants’ statements make it clear how vital medications are in their lives, as they are not only necessary but essential.

The pharmacological treatment for BD benefited all participants in this study, significantly improving their clinical condition. However, even after positive experiences, the consensus was that pharmacological treatment alone is insufficient and has limitations, as the following statements illustrate:

The perception of medication as a support system was unanimous, meaning it is part of an integrated approach to achieving and maintaining stability. According to i7: “Medications do what I can’t do naturally; they provide the biochemical stability for my brain, but it’s just a support”.

Medication can assist in promoting psychological balance, but to address the impact of stressors identified as crisis triggers, clinical management should incorporate non-pharmacological approaches. Certain approaches are cited as crucial for overcoming crises, namely, striving for quality of life, mechanisms and specific therapies for controlling substance use and abuse, and psychological therapies.

Regarding quality of life, aspects include healthy eating, physical activity, and challenges or facilitators in family and social relationships, all noted as extremely important factors for stability.

Everyday interactions with family, friends, and colleagues can also generate conflicts and stress that “trigger crises”. A “negative environment”, even when the patient is on a suitable medication and dosage, may not be sufficient to maintain balance. In family settings, difficulties arise related to lack of knowledge, prejudice, and stigma, which associate the participants’ symptoms with pejorative characteristics – such as laziness. Negative remarks and judgments impact adherence to treatment. Participant G1 stated that, before experiencing her first crisis, she was perceived as a “typical tired teenager”. Similarly, G2 reported: “I was lying on the floor and couldn’t do anything. I was seen as lazy. Those closest to us don’t understand our suffering, don’t feel what we’re feeling, and so they criticize.” Regarding stigma, G2 stated: “I believe there is a stigma surrounding mental disorders, and this entirely affects treatment adherence”.

The feeling of being misunderstood during crises is common. Participants expressed frustration toward those who doubt the intensity and origin of their symptoms. G2 reported:

Living with family is challenging and turbulent. For i1, her family members’ approach to caregiving is questionable, as she reported not receiving the necessary treatment during a depressive episode in adolescence, influenced by her mother: “They worried but belittled me, saying I was incapable and couldn’t do anything on my own. My family is completely dysfunctional (...) there are cases of child sexual and psychological abuse, among many unpleasant and harmful situations”.

Regarding the same issue, G2 reported:

The participants discussed the importance of family support, both financially and in monitoring the signs and symptoms of the illness, as evidenced in a statement from i7: “(...) my mother said, ‘Look, I’ll pay for a private psychiatrist for you.’ She then began to forgo paying household bills to cover the cost of a private psychiatrist”.

Another therapeutic approach experienced by all participants was psychotherapy. Participant i6 noted that therapies primarily helped in learning to recognize signs and symptoms, as well as in adhering to treatment. Similarly, i5 found that therapy enabled better management of symptoms and helped distinguish between crisis-inducing symptoms and personal characteristics.

The experience with medication use involves both positive and negative aspects. Certain adverse effects were cited as obstacles to pharmacological adherence – for instance, participant i3 experienced severe constipation due to lithium, leading to treatment discontinuation. Participant i7 reported difficulty adhering to medications causing excessive somnolence, such as quetiapine; therefore, his psychiatrist included lurasidone in the prescription as an alternative antipsychotic, maintaining quetiapine at a low dose of 25 mg for use if needed. Another crucial issue for i7 was the lack of resources to purchase the high-cost medication, lutab (lurasidone), which led to crises and instability as the treatment was interrupted for months. Only later was he able to secure funding to start using the medication, achieving stability for the past two months.

Severe adverse effects also prompted the discontinuation of medications, such as suicidal ideation with lisdexamfetamine and hypomania/mania with methylphenidate, lisdexamfetamine, and antidepressants. Participant i8 discontinued valproic acid use due to joint stiffness. Other effects, such as excessive weight gain, heartburn, dizziness, excessive drowsiness, and severe nausea/vomiting were also cited as reasons for discontinuation. On the other hand, some medications, despite causing adverse and side effects, were tolerated and used correctly due to the stability they provided.

At times, each participant’s opinion led to decisions influencing significant directions in the course of treatment. Participants i1 and i4 reported actively participating in changes to their treatments: i1 suggested using mirtazapine, and both i1 and i8 proposed adjusting the timing of medication administration to nighttime. Participant i6 requested the suspension of quetiapine, as it caused excessive nausea, and lithium, which neutralized their mood, leading to emotional blunting.

Thus, participants in the FG report living with chronic medication use and many uncertainties. They are uncertain whether the treatment is the most suitable for their bodies. Participant G2 also expressed concern about the long-term effects of medication on the body, having started treatment at age 14: “One thing that bothers me a bit is the effects of the medication on my body, because I’m straining my liver, straining my kidneys. What will become of my future?”. G2 further stated: “As G1 mentioned regarding the cost-benefit issue, if I don’t undergo treatment today, how will I be tomorrow? So, I don’t see any rational reason not to pursue pharmacological treatment”.

The participants reported that they were previously seen as lazy, among other pejorative labels. Upon experiencing the benefits of medication, they began to view themselves differently, stating that from then on, they recognized their ability to distinguish between symptoms related to BD and their personal characteristics.

The discrepancy in self-reported behaviors following the use of the most effective medication was a common point for most participants. For G3, suicidal ideation and mood fluctuations, which were recurrent, became controlled, decreasing in frequency and intensity with treatment. For some, the change was so abrupt that it took time to recognize themselves again.

The participants weigh the pros and cons of medication use, concluding that the benefits are more significant. Despite the challenges, mood and behavioral stability improve with medication, and positive meanings are attributed, such as “brakes”, “safety”, and “prevention”. These terms are directly related to crisis prevention, reduction, and an increased sense of safety. The medication protects them from severe crises, enhances awareness of risky situations, reduces negative thoughts, and regulates changes in the perception of what is real.