A grounded theory on acceptance of diagnosis as a pathway to recovery in bipolar disorder

We included 26 participants in the study, nineteen women and seven men (supplementary material I). Based on the analysis of participant reports, we identified two main themes: (1) living with the illness, and (2) what it means to be in recovery.

Living with the illness

We understand from the participants’ accounts that it is crucial to know what it is like to live with bipolar since recovery is a process that begins with the history of diagnosis. According to the accounts, this period tends to be lengthy and painful. It involves many uncertainties, fears about the illness and treatment, and great difficulty in understanding and accepting this condition.

“I thought I wasn’t sick. When it’s something like the heart, you know it’s the heart. The liver, you know it’s the liver, but understanding that it’s here (points to the head) is difficult, it’s really difficult, very complicated” (E02).

Therefore, the person hopes to be supported by those close to them because it is a period that requires tolerance and resilience. With the definition of the diagnosis, a possible path is a movement towards accepting the illness and constructing a new identity, accompanied by the process of mourning for the losses and limitations resulting from this condition.

“I tried to resist because I was a much more energetic person, I lived in the manic phase and then when I started taking medication, my mood became dampened. I no longer had that side that fought, but I had a side that didn’t seem like me, and I complained to the doctor. I argued with the doctor. And she said to me—look, now you’re neutral, you’re no longer up, you’re neutral, and then I said—no, I don’t want to be like this. So, I prefer to stay as I was before. I wanted to be altered, I wanted to be impulsive, and she said no, no chance. You have to treat yourself, and in the end, I had to accept it (…) I had to accept it, right. There was no other way. There comes a point where we have to accept it” (E07).

In this scenario, different processes connect treatment and recovery. The first one involves accepting the diagnosis and is mediated by health literacy and the quality of the bond with the healthcare professional. Knowing and recognizing bipolar disorder and its demands helps the individual understand the need to take on their treatment and, therefore, experience its benefits.

“I suffered a lot for about two, three years because I didn’t accept it, didn’t understand it, didn’t have knowledge. And then after that time, when I hit rock bottom, that’s when I started searching, understanding, researching, reading about what was happening to me. That’s when I finally understood” (E02).

To facilitate this process, our interviewees emphasize the importance of considering different management strategies in the treatment and viewing medication as a part of the recovery process, but not the final stage.

“This influenced me to open my eyes and see that there are other options besides medication. Taking a sunbath, at least on the wrists, walking, diet. I like music, and I like to read some things too. So, adding these things to medication has been beneficial (…) if you don’t change these things, it can worsen. And medication is not everything” (E19).

Additionally, establishing a quality bond with the healthcare professional, that is, a respectful relationship with space for the joint construction of a treatment plan that can balance the person’s expectations with the disease prognosis, as well as discussing recovery issues and a life plan, has the potential to bring the subject closer to their treatment and experience the feeling of recovery. In real life, coping is supported by the perspective of an integral treatment and their support network. These strategies contribute to preserving autonomy, establishing a good relationship with treatment, and the possibility of recovery.

“With each of them (doctors), I maintained this bond, and I learned more with each one because with them, I became a person. With them, I can talk about my projects, correct my course, see if I’m okay, have that confidence that with them, I can talk, I can talk about my studies, I can talk about my medications, I can talk about my whole life” (E10).

“Usually, I write down the things that I feel physically and mentally, and generally, in depressive crises, I also do these same things, I write down these things and bring them to the appointments to discuss together about what we can think or do from there” (E16).

“That’s why I say—sometimes, another resource can help you get out of that thing. The doctor wanted to give me medication, but I insisted on psychotherapy, and he got me a spot. And then with the psychotherapy doctor, we were working on it. I never refused—oh, I’m not going to take the medicine, but I wanted to at least try, and then in therapy, we were going, working, until I got out of that horrible depression that I was in, and I didn’t need to use medication. I remain with the ones I already had” (E08).

Another story involves the difficulty of understanding and accepting the diagnosis, leading the individual to a more pessimistic perspective regarding the course of the illness and the outcomes of treatment. This approach brings them closer to significant limitations, making them prisoners of the symptoms and further away from the possibility of recovery. Symptoms and stressors are avoided, rather than faced.

“I used to take that medication, I would improve and then stop taking it because, as I told you, I believed I had no illness. And of course, after some time, I would relapse again” (E08).

“I believe that being able to focus only on the treatment and not worry about going out to work or face other things and problems, I think that helped” (E17).

In addition to exacerbating isolation and loss of autonomy, this path leads to a feeling of frustration and helplessness in the face of the illness, contributing to a lack of hope in oneself and the possibility of recovery.

“When I used to work, I would fix my hair, eyebrows, do my nails, but now I do nothing, I don’t take care of myself, I don’t do anything, I don’t have any desire, really. And it’s everything, not just that. I don’t go to the gym, I don’t go for walks, all of that (…) I’m already aware that it will be like this for the rest of my life. I have no hope, no objective, I don’t think it’s going to change” (E17).

What is it like to be recovered?

For our interviewees, being recovered means establishing a good relationship with the chronicity of the illness, with the possibility of relapse and with the treatment.

“I’m not sure, but as far as I know, it’s not something that has a cure, it’s something that you’ll learn to deal with somehow, and then I think that recovery in this case is like, it has to do with the treatment issue, but it’s like, being able to align it in a way that you can live with your disorder—because it won’t disappear” (E16).

Also, being recovered means maintaining a stable mood, being reintegrated into different social roles, and accepting that the illness is a part of your life but does not define or limit you. Furthermore, being recovered means feeling capable of regaining autonomy and control of your life and of thinking and achieving goals.

“I feel recovered. I haven’t had any visions or heard anything anymore. Of course, there are days when I’m sadder (…), but I’m managing to do my things, sleeping well” (E20).

“Before, I didn’t see any color, there was no color in my life. And now there is color. So, for me, that’s already a recovery, it’s a big victory (…). My life has meaning again. I’m becoming an active person again” (E10).

Our participants indicated factors they consider crucial for recovery, and the first step of this process is accepting the diagnosis and treatment, combined with health literacy.

“Actually, I was quite relieved to have my diagnosis more accurate because then I could have confidence in a treatment that would actually work” (E16).

A quality relationship with the healthcare professional was also described as essential for recovery because it establishes a bond and facilitates the person’s involvement in their treatment. In this sense, the professional should empower and invest authority in the individual for more assertive decision-making regarding their treatment, promoting the necessary protagonism and autonomy for the construction of a recovery plan.

“The healthcare professional must be humane, they must have empathy, it’s not just about giving a prescription and that’s it. And when you find a humanized professional, you feel welcomed. As I said, things that I don’t talk about with a friend, when I go to the psychiatrist, I can express myself” (E17).

“I know that the doctor has knowledge ten thousand times greater than mine, but I’m the one taking the medication, and I think that if I’m not doing well, I have the right to say that I’m not doing well until it’s adjusted” (E26).

Receiving support from important people through respectful, sensitive, and effective care is essential in the process of accepting and recovering from the illness.

“I have already had manic episodes, had about three strong depressive episodes, and was hospitalized, had episodes of self-mutilation, and it is very sad because at that moment, we do not have a perception of what we are doing to ourselves. And one very important thing to keep in mind is that having someone by your side who gives you support makes all the difference. Now I have entered a depressive phase, and my husband helped me a lot—he went to the appointment, understood, talked to me, did not force me to do anything I didn’t want to” (E07).

Recognizing signs and situations that can trigger more acute symptoms was also described as essential for recovery. For many participants, this is a reflective and challenging process because it is often difficult to separate their personal characteristics from the symptoms.

“What is the measure of normal extraversion? There is no measure. What will happen is continuity, if this euphoria remains and starts to manifest itself in strange ways that make people uncomfortable or put me at risk, but the measure of being excited about something is very similar—a normal thing of a turn. I can be super excited about something, now if it continues like this, right…” (E28).

Finally, the ability to think about objectives and plan a life in the presence of the illness and its treatment is crucial for recovery and should therefore be included in the treatment plan. To turn these objectives into a life plan, it is important to understand the illness and its prognosis and accept that despite the changes, it is possible to build a new life trajectory:

“In the exchange of medications, I was stabilizing, improving, and then I started studying again, doing projects always with the doctor who treated me. We started rebuilding together. Everything in parts so that I wouldn’t have a setback…it was all in stages, like a child. So it was all planned, happening little by little, but I started’’ (E10).

There are also factors that hinder the recovery process. According to the reports, delayed diagnosis and consequently delayed initiation of more assertive treatment, a weak therapeutic alliance, little engagement in treatment and outsourcing of care, avoidance behaviors, socio-economic and cognitive difficulties act as important obstacles to recovery. These factors contribute to loss of autonomy, excessive side effects with medications, identity excessively infiltrated by the illness, greater cognitive decline with disease progression, delay in adjusting the treatment plan and experiencing its benefits, and a sense of irrecoverable losses throughout life.

“This delay was also due to a lot of prejudice, disbelief, and lack of importance. It was also due to a lack of interest because if they had an interest, they would have gone there and asked the doctor. Many situations of hospitalization that disrupted my treatment would not have occurred” (E10).