Below, we present the two themes and eight categories representing the determinants of health described as important by participants to their health, well-being, and ability to live a meaningful life. Themes and categories are illustrated in Table 4.

Theme 1: Managing mental Illness and physical health problems

The five categories within this theme were: access to mental healthcare adapted to individual needs, strategies during deterioration, use of psychotropic medication, maintenance of physical health, and lifestyle.

Category 1: Access to mental healthcare adapted to individual needs

The interviewees’ current mental health status varied. Some had been without symptoms for years, others experienced intermittent symptoms, and a number had continuous symptoms to varying degrees. A majority of interviewees expressed satisfaction with mental healthcare services, but others wished for more involvement in the decision-making process regarding their follow-up care. As one stated:

I wish professionals were more interested in my needs and preferences. They have not usually inquired about my desired healthcare or follow-up plan. There have been no alternatives besides seeing a psychologist (Participant 11, female).

Approximately half of the participants interviewed primarily relied on their GP for managing their mental health, while the remaining group received additional support through municipal mental healthcare and/or outpatient treatment from the CMHC. Several participants regularly saw mental health professionals from the municipality in professionals’ offices or at home and discussed the challenges faced trying to organize the necessary support. One individual had medication delivered twice weekly and had a pill dispenser filled weekly by home-based healthcare services. He also underwent drug substitution therapy for substance dependence (LAR). Another participant received monthly depot injections from professionals at the CMHC, while also receiving visits from municipal mental health professionals every other week for consultations and seeing a CMHC psychiatrist every three to four months.

Several participants received outpatient treatment from the CMHC, with varying experiences. Some were satisfied while others found it to be of little use. One person noted that the advice he received was mostly familiar to him, such as making sure to visit others and stay physically active. Another stated:

The psychologist treated me like I was sick. It was fine at first, but then I felt like she was making me sicker than I actually was. I know that when I am healthy, I am healthy, so I would like to concentrate on that (Participant 2, female).

This person now received home visits from a municipal mental health professional every other week. She said that she could talk to this worker about anything and that she was happy with this follow-up. One woman, who had had the same therapist for 25 years, emphasized the importance of continuity in the recovery processes, having a therapist who knew her history and could tolerate her as a person, even during disagreements. She stated:

I changed therapists so often when I was younger. It did not work for me. It was like digging and digging, the same thing always. I just got sick of it. The benefit of having the same therapist is that she knows everything. There is no point in repeating it. Even when I was admitted – she came there too. I have told her I am so glad she puts up with me (Participant 3, female).

Category 2: “Living with mental Illness is not easy” – strategies during deterioration

Close follow-up was beneficial during times of deteriorated or unstable mental health. Some participants expressed frustration with their vulnerability to deterioration and their difficulty managing symptoms, particularly when faced with multiple stressors. One man expressed:

It is frustrating that I cannot handle more. I cannot focus on one thing at a time whenever I become unwell. There is simply too much going on, and it becomes overwhelming. I find myself getting caught up in trivialities. However, I must accept that this is part of my life. Living with mental illness is not easy (Participant 1, male).

Interviewees talked about their struggle to recognize symptoms and distinguish reality from perception during periods of deteriorated mental health. One could sense unstable mental health but found it difficult to respond to symptoms:

During episodes of mania, I often observe a rapid deterioration. However, recognizing the severity of my condition becomes difficult, despite being aware of my declining well-being. Managing my unstable mental health becomes challenging, necessitating assistance seeking mental healthcare and receiving proper treatment from professionals (Participant 10, female).

Some interviewees had developed emergency psychiatric care plans with the help of professionals and family members. These plans included information on what to do in case of deterioration and how to identify warning signs. One man detected changes in sleep quality when he began to experience deterioration. He explained:

Things start to go wrong when I lose sleep. I believe my lack of sleep is a symptom of deterioration rather than a cause. I occasionally use zopiclone to help me fall asleep and I have previously been prescribed diazepam during a period of high stress and anxiety related to work. It allowed me to unwind in the evenings and improved my sleep and mental health (Participant 9, male).

One interviewee received a follow-up during a period of deterioration where CMHC professionals came to her home for conversations and walks. She also received medication delivery from home-based healthcare twice daily until her mental health was stable. Some participants had turned to the CMHC’s acute team for care during periods of deterioration and were satisfied with the follow-up, which included home visits. One participant shared that during a difficult period, he received follow-up conversations with a psychiatric nurse in the emergency room. He stated:

If you feel like your life is truly bad, you can have a couple of consultations there – then at least you get the worst out (Participant 7, male).

The participant expressed a desire to avoid psychiatric admission. However, during periods of deteriorated mental health, such care might be necessary to stabilize severe symptoms. Many participants experienced multiple psychiatric admissions. They reported that they were usually admitted once they requested it, and their GP typically referred them. Some shared that they recognized when hospitalization was necessary. One said:

At times, I have asked to be taken to the hospital, and once I am there, everything falls apart, and I end up experiencing a full-blown psychosis (Participant 2, female).

Another person explained:

When I become ill, it becomes pretty severe, particularly during manic episodes. Mania is extremely challenging, and being in the hospital is my best option. Retaining and shielding myself from everything is comforting to calm down (Participant 10, female).

Category 3: “I must take my medication to stay well “- use of psychotropic medication

Multiple participants stated that their mental health had improved with age. They highlighted psychotropic medication as the primary reason for stable mental health. One woman said:

I confided in a friend of mine who is a psychiatric nurse that there is one thing I fear the most: getting sick again. This thought stresses me out, and stress can trigger my illness. My friends, family, and professionals have all warned me that stopping my medication could lead to deterioration, which I have also learned from previous experiences. I must take my medication to stay well (Participant 2, female).

For some individuals, the desire to distance themselves from their previous experiences with SMI was central, as excessive dwelling on these experiences negatively affected their well-being. Despite this, they acknowledged the necessity of adhering to a daily medication routine, noting that this constantly reminded them of their previous condition. They recognized that lifelong medication intake was likely necessary. As one expressed it:

I rely on medications to maintain optimal health. Some people try to reduce their medication, but it is not something I want to try. The medication protects me from stress and helps with sleep, which is crucial, especially since my workdays can be stressful (Participant 10, female).

The interviewees say their GPs follow up on medications and write prescriptions. Several talked about how they had spent years finding the best type of medication for their symptoms and the optimal dosage with the desired effect. One person said:

I have previously been given excessively high doses, which made me feel sluggish and overmedicated. Despite trying various medications, none had the desired effect and I just got worse. I have quit all medications several times and started over again to find the proper medication, often during hospitalization. This has been beneficial in order to be prescribed proper medication, which has made it easier to manage my medication regimen (Participant 10, female).

Some interviewees had experienced unwanted side effects such as fatigue, seizures, emotional flattening, and weight gain. One man described becoming mentally ill and hospitalized for the first time in high school. He was prescribed olanzapine, which made it challenging to complete his education. His mind was slower, learning was difficult, and he received poor grades despite studying a lot, eventually opting to end his education. Another said:

I think the medication does something to my metabolism. I do not eat more than before but still gain weight (Participant 9, male).

One interviewee shared that he was prescribed antipsychotic medication several times when he experienced poor mental health. Despite this, he stopped taking medication due to side effects, even when advised against this by professionals. While some interviewees said that they could taper off medication with the help of their GP, others had not yet found a medication that made them symptom-free. One man said:

I have tried several types of antipsychotic medication but still hear voices. I also tried without medication but quickly became ill again. It only lasted a few months, and then it got completely messed up in my head. I eventually realized the importance of medication and now take it regularly. The ones I use now are the ones that have had the best effect (Participant 13, male).

Numerous participants who discontinued their medication reported a subsequent deterioration of their mental health. This led to an exacerbation of symptoms and substantially impacted their well-being. Moreover, it often resulted in the need for sick leave, hospitalization, and an increased reliance on coordinated healthcare. One participant said:

I stopped taking my medication when I was about to become a father. I thought I would try without it. However, I lost sleep, became ill, and was hospitalized for a month. I was last hospitalized five years ago when I also stopped taking medication. During that hospitalization, I started on antipsychotics again and have been stable since then (Participant 9, male).

Category 4: Maintenance of physical health “challenged by misinterpreted symptoms”

Several interviewees had experienced physical health problems that affected their well-being and ability to carry out everyday tasks. Some described it as easier to manage physical health challenges than mental ones, as physical challenges were more concrete. As one stated:

I have a herniated disc in my back and a sore shoulder that can cause discomfort and affect my sleep and ability to work. However, it is nothing compared to my experienced mental chaos (Participant 12, male).

Participants said that it was common for their GPs to perform routine health checks, follow up on physical health, and coordinate with specialist health services as needed.

Overall, they were satisfied with the follow-up regarding their physical health. The conditions mentioned included cardiovascular diseases, cancer, kidney diseases, metabolic diseases, uric acids, gastrointestinal diseases, tinnitus, and different types of pain, including back pain, arm pain, shoulder pain, joint pain, fibromyalgia, and headaches. Interviewees were eager to manage these problems through, for instance, medical appointments, medication, exercise, and physical therapy.

There were instances where the interviewees talked about where doctors erroneously interpreted their psychical symptoms as part of a psychiatric condition. In the research literature, this is referred to as “diagnostic overshadowing” [22, 28]. One such instance involved a woman who had a kidney infection, which was mistakenly recognized as a psychiatric issue. She also reported being prescribed anxiety medication for pneumonia as her doctors believed it to be anxiety-related. It was also discussed that metabolic diseases could have contributed to mental illness. For example, one woman received radioiodine treatment for hyperthyroidism and had stable thyroid function. She suspected that her previous hyperthyroidism might have triggered episodes of mania as she now experiences stable mental health. There were also mentions of lifestyle-related issues such as inactivity, smoking, and obesity causing physical health problems. One stated:

As I have gotten older, I have noticed a significant decrease in my energy levels and motivation. I have been dealing with many physical health problems, including high blood pressure, gout, and high cholesterol, all requiring medication. My smoking habit may also impact my health, although I have been fortunate not to experience substantial breathing difficulties thus far (Participant 13, male).

Category 5: Lifestyle

Some interviewees noted the importance of eating nutritious food to maintain a healthy lifestyle and normal weight. One interviewee decided to stop smoking tobacco and experienced a notable decrease in the severity of psychotic symptoms. In addition, several individuals were aware of the importance of keeping alcohol consumption moderate, not drinking to feel better, and staying away from illicit drugs. One said:

I have never used anything other than alcohol. Doctors and psychologists have told me that if I start using illicit drugs, the chance of psychosis increases considerably. So just abstain from it, they said- and that is what I did (Participant 7, male).

Interviewees highlighted the significance of sufficient sleep to preserve stable mental health, well-being, and daily functioning. While sleep quality varied between participants, most usually slept well. There were concerns about healthy sleep routines, but and some found it challenging to maintain these. One stated:

There are nights when I do not sleep. I know what is vital to promote sleep, but it is one thing to know and another to actually do it. For example, I should not watch TV until bedtime, but I still do. I also should not use my iPad late at night, but do not you think I still sit and watch it before bedtime? (Participant 2, female).

Several participants found physical activity to influence health and well-being positively. Specific activities varied, with one swimming 3000 m a week to stay in shape and another reporting they used to play handball but now enjoyed walking in nature and camping with his children. Many enjoyed walking alone, with friends, or with their dogs, and reported more walks during the summer than in the winter. A few participants were discontented with their inadequate physical health, which restricted them from engaging in physical activity, despite being aware of the antidepressant benefits of such activities.

Theme 2: Social health determinants in coping with mental Illness

This theme comprises three categories: family and friends, engaging in meaningful hobbies and activities, and the influence of employment on mental health. These social determinants influenced participants’ ability to lead a stable and meaningful life and manage health challenges.

Category 6: Family and friends – a double-edged sword

Many participants talked about the importance of their family and friends in managing their daily lives and social participation. Friends and relatives provided support, encouragement, and motivation to help navigate life’s challenges and uncertainties. Several interviewees expressed that they enjoyed spending time with their parents, children, or grandchildren. These social relationships played a vital role in helping them deal with stress, find a safe space to discuss their problems, and share their successes.

For instance, one man lived alone but often felt lonely. Thus, he spent some nights at his parent’s home, receiving food and help with transportation as he did not own a car. Another noted he was grateful for his children, who lived at home with him. He enjoyed visiting cafes with his daughter and found this meaningful. He also provides support to a friend who struggled with his mental health. One female participant had a supportive network through her children, grandchildren, and helpful friends. She added:

I have a very active social life, and I have always had many friends, many of them for different purposes. I always have someone I can visit and talk to (Participant 2, female).

However, interviewees also experienced loss and complicated social relationships. One participant discussed how his relationships became complicated due to years of mental illness and substance use, resulting in limited contact with parents, children, and grandchildren. Another was struggling with the death of his spouse about a year ago after 30 years of marriage. However, he fondly reminisced about their shared adventures. Similarly, a woman struggled with losing her husband and the void it created. She particularly missed the ability to confide in him, as she valued his trustworthy nature. She expressed:

One of the things I miss most about my husband is being able to talk to him and complain to him. I knew he would never tell anyone so I could tell him everything. My husband used to look after me, but now my children are trying to take that role instead (Participant 2, female).

Category 7: Engaging in meaningful hobbies and activities

Interviewees highlighted the importance of hobbies as a way to capture their attention positively, bring enjoyment, and add meaning to their lives. Some enjoyed knitting, gaming, cooking, or having pets, while others mentioned surfing and sailing with family in the summertime. One interviewee had a sailboat that he had refurbished with his father and had invested much time in this practical activity. One woman mentioned having several hobbies and having trouble finding time for them all:

I have so many hobbies I can engage in. I especially enjoy having birds. It is nice to watch and to feed them. I also enjoy knitting, beading, and sewing. I would like to read more. I have many books but do not always have time to read them (Participant 4, female).

One individual used to have a personal support contact taking him out on activities. Personal support contacts help other people spend their free time actively and in a meaningful way. However, this offer was no longer available due to economic constraints in the municipality. Now he often spends time alone. Despite feeling overwhelmed, he tries to join in hikes and activities at a peer-driven café. One woman had experience singing in a choir and found joy in listening to music. Another has a professional from mental health home care who helps with transportation to social activities such as birthdays, seaside strolls, dining out, museum visits, and shopping.

Category 8: “Having a job has probably saved me” – the influence of employment on mental health

The interviewees’ diverse employment experiences highlight the positive and negative impacts of work on health. While employment can offer structure, purpose, secure income, and economic control, work-related stress can lead to deteriorated mental illness. Notably, participants found that being open about their mental health challenges with colleagues created a sense of understanding that promoted health and well-being.

Participants were employed in different fields, including engineering, information technology (IT), psychiatric care, grocery stores, and construction. For example, one person attended engineering school, worked in IT, and performed well in the same job for over two decades. Another person was currently employed at a psychiatric ward, and his experience as a patient provided valuable insights into the needs of patients in this setting. One interviewee worked as a painter and received help from colleagues due to his bad shoulder. This assistance enabled him to continue working.

Interview participants highlighted the importance of their work environments and colleagues for their health and well-being, noting how positive work experiences helped protect them from negative health consequences. One illustrated this:

I have always been employed. Having a job has probably saved me. It would not be good for me to just sit at home staring at the wall. I saw a psychiatrist the last time I was worried about starting a new job. We briefly discussed it and altered my medication to help me relax, and everything went well from there (Participant 8, male).

Some individuals experienced work-related stress that exacerbated mental illness symptoms, leading to instances of sick leave or disability benefits. One individual achieved greater stability by transitioning to a daytime position, contrasting a previous stressful job that required working during evenings, nights, and weekends. Another had tried several jobs, but work-related stress contributed to the deterioration of his mental illness. However, he later gained an education in IT. He said:

It worked much better with education in adulthood rather than in high school. I enjoy working in the IT industry. I realized I fit in well and received positive feedback from colleagues and partners (Participant 9, male).

However, interviewees may require sick leave during high stress and pressure at work. One gave an example:

We had been under a lot of pressure for six months. Therefore, I had no choice but to take sick leave for over a week. I returned to work before fully recovering because my colleague was under more pressure and I needed to return quickly (Participant 9, male).