“Excluding Myself From What I Need the Most”: Experiences of Loneliness in People With Inflammatory Arthritis: A Qualitative Study

ABSTRACT

Objective

Despite advancements in pharmacological treatments, living with inflammatory arthritis (IA) (including rheumatoid arthritis (RA), psoriatic arthritis (PsA), and axial spondyloarthritis (axSpA)) can make it challenging to engage in social activities, which may increase the risk of loneliness. Although loneliness is predominantly prevalent in IA, its origin and impact on mental health status on daily life with IA remain unexplored. Therefore, the objective of this study was to describe the experiences of people with IA in relation to loneliness.

Methods

Semi‐structured telephone interviews were conducted with purposefully sampled participants who reported loneliness. Reflexive thematic analysis was applied to analyze data.

Results

The interviews included fourteen participants (RA (n = 5), PsA (n = 5), and AxSpA (n = 4)) with median age of 47 (range 25–76). We developed three themes: (1) “Loneliness amplifies the negative impact of IA,” illustrating the experience of loneliness as an integrated part of the participants' struggles; (2) “Excluding myself from what I need the most,” detailing participants' awareness of their need but inability to engage in social activities; and (3) “Longing for loneliness to be addressed,” expressing unfulfilled wishes for health professionals to address loneliness.

Conclusion

Participants in our study reported that loneliness had a profound impact on their overall well‐being and self‐management. Overall, there is a critical need to address loneliness as an essential issue for people with IA, highlighting the necessity for increased support and recognition. By addressing loneliness, health professionals can protect patients' mental health and help them navigate social connections, enhancing their self‐management and overall well‐being.

Summary.

• Previous studies have found self‐reported issues of loneliness in 20%–30% of patients with inflammatory arthritis. Therefore, it is crucial to investigate this experience further to gain a deeper understanding and facilitate appropriate interventions for patients experiencing loneliness.

• The experience of loneliness had a profound impact on the participants overall well‐being in daily living with inflammatory arthritis. Loneliness involves a fundamental unmet desire for social relations, yet symptoms such as fatigue often lead to withdrawal from social activities.

• Our findings underscore the critical need to address loneliness as a significant issue for people with inflammatory arthritis, emphasizing the necessity for enhanced support, involvement, and recognition from health professionals in clinical practice. However, the specific initiatives that should be implemented are still unclear.

1. Introduction

Inflammatory arthritis (IA), comprising rheumatoid arthritis (RA), psoriatic arthritis (PsA), and axial spondyloarthritis (axSpA), is a chronic autoimmune disease. Despite pharmacological advancement through the past decades, living with IA can be difficult both physically and emotionally, as people often experience pain, fatigue, and joint or back stiffness, which can make it challenging to engage in social activities and build connections with others, increasing the risk of social isolation and loneliness [1]. Perlman & Peplau defined loneliness as a subjective experience that is not necessarily synonymous with objective isolation [2]. Also, Cacioppo and William [3] viewed loneliness not merely as a subjective state but as a vital signal of disconnection that can lead to adverse psychological and physical consequences. Specifically, researchers have linked loneliness to an increased risk of various health issues, including impaired immune function, cardiovascular dysfunction, cognitive impairment, and premature mortality [4, 5]. Studies have shown that loneliness is more prevalent in people with IA compared to both the general population [6, 7] and people with other chronic diseases [8]. A population‐based survey conducted in the Capital Region of Denmark in 2021, revealed a higher degree of loneliness among people with IA compared to the overall population after adjusting for age and gender [9]. Additionally, we recently conducted a national cohort study, the Mental Health in Inflammatory Arthritis (MaIA) study, which showed that 1/3rd of patients with IA reported loneliness, which was associated with a higher impact of disease and symptoms of anxiety and depression [10]. More importantly, a recent longitudinal study showed that loneliness was associated with increased severity of depressive symptoms over a 12‐year follow‐up period, independent of objective social isolation and social support [11]. This is especially interesting in light of evidence reflecting that depression is the most frequently reported mental health problem in persons with RA [12], with prevalence estimates ranging from 10% to 40% [13, 14]. Understanding of the causes and consequences of loneliness, including the impact of loneliness on the everyday lives of people with IA, is limited. Moreover, the interrelatedness of loneliness and mental health in the context of IA remains relatively unexplored. Consequently, little is known about how loneliness should be addressed in clinical rheumatology practice. Therefore, the objective of this study was to describe the experiences of people with inflammatory arthritis in relation to loneliness.

2. Patients and Methods

2.1. Study Design

The study embraced a qualitative design with semi‐structured telephone interviews.

2.2. Participants

Participants were selected from individuals who had previously participated in the national cross‐sectional study MaIA examining mental health in people with IA [15]. We used extreme case sampling [16] to ensure particularly rich data and thus increase information power [17]. Specifically, participants were considered eligible if they

• answered “yes” to the question, “Are you sometimes alone even though you would prefer to be with others?” and responded “often” to the follow‐up question, “How often do you feel unwillingly alone?”

• scored > 10 on the Hospital Anxiety and Depression Scales (HADS) [18], indicating clinical levels of anxiety and depression.

• had given informed consent in the MaIA study [15] to be contacted for an interview.

Finally, we strived for the selected participants to represent a diverse group with respect to sex, age, IA diagnosis, and geographical representation from all five regions in Denmark (i.e., maximum variation sampling). Participants received a telephone call from the interviewer (AN), who scheduled the telephonic interview. Written information and a declaration of consent were sent by email and returned by the participants.

2.3. Semi‐Structured Telephone Interviews

The semi‐structured telephone interviews conducted from September to November 2022 during the COVID pandemic followed a predefined interview guide, which included questions related to topics such as daily life with arthritis, mental health, loneliness, social relations, anxiety, and depression (Table 1). The guide was developed based on the study aim, current evidence, and feedback from two patient research partners involved in the project [19]. The telephone interviews were conducted following Burke and Miller's recommendations [19], ensuring familiarity with the interview protocol, a professional tone, and consistent question phrasing and order to preserve data reliability and integrity. During the time of the interview, it might have been up to 6 months since some participants had responded to questions about loneliness in the MaIA cross‐sectional study. To confirm that the participants were still experiencing loneliness at the time of the interview, the sessions began with questions regarding their current feelings of loneliness.

TABLE 1.

Interview guide.

Arthritis How do you generally feel in relation to your arthritis? What kind of treatment are you currently receiving? Please describe your daily life with arthritis. How does arthritis impact your desire to socialize and interact with others? Mental Health What comes to mind when you hear the term “mental health,” and what does it mean to you? What are your thoughts on the relationship between mental health and arthritis? What specific assistance or support do you require for maintaining good mental health? Loneliness Please share your thoughts on loneliness. On a scale of 1 to 10, how often do you experience loneliness? Whom do you typically confide in when you feel worried, sad, or lonely? Social Relations Please describe your social network. With whom do you have the most frequent interactions? Friends or family? How does the status of your social network relate to your experience of loneliness? Anxiety What are your thoughts on experiencing anxiety and worry? To what extent does anxiety impact your daily life? How does anxiety correlate with your feelings of loneliness? Depression How do you perceive depression and feelings of being down or in a low mood? Have you ever experienced a lack of interest, desire, or joy? Please describe that feeling How does depression connect with your experiences of loneliness? COVID How has the COVID‐19 pandemic influenced your sense of loneliness? In what ways has the pandemic affected your interactions and connections with others? Activities Please suggest any activities or programs that might alleviate or mitigate your involuntary loneliness How do you think medical professionals such as doctors and nurses, with whom you interact during your arthritis treatment, could assist in alleviating instances when you feel involuntarily alone or lonely?

The interviewer (AN) was an experienced nurse with more than 15 years' experience caring for people with mental health challenges and was confident in her ability to facilitate investigative conversations. AN encouraged the participants to talk freely. To ensure adequate information power [17] an initial sample assessment was conducted and continually evaluated and refined throughout the research process. After the first nine interviews, BAE (an experienced rheumatology nurse) and JM (a psychologist); both of whom are experts in qualitative research, read the transcripts. Discussions were held to assess the interview process, allowing for potential adjustments. Consequently, it was decided to conduct an additional five interviews to maximize information power [17]. This decision supported our evaluation that we had achieved sufficient depth and variation in the participants' descriptions and therefore did not need to interview additional participants.

If something happened during or after the interview that raised concerns about the psychological well‐being of the participants, the interviewer inquired about it either during the conversation or in a follow‐up call. The participants were explicitly informed that they were encouraged to contact the interviewer later if any questions or anything else they needed to add came to their minds. The characteristics of the participants were obtained from the national cross‐sectional MaIA study [15].

2.4. Data Analysis

The duration of the interviews ranged from 17 to 41 min (average of 29 min). The interviews were analyzed according to the six‐phase reflexive thematic analysis [20, 21, 22] process. The interviewer herself audiotaped and transcribed the interviews verbatim to become familiar with the text and to create an overall impression of the content. Transcripts were entered into NVivo 12 (QRS International) for analysis. The first interview was independently coded inductively by three researchers from the study group (AN, BAE & JM), after which the codes were shared and discussed, and a provisional coding scheme was agreed. AN coded the remaining interviews, grouped the codes and wrote down suggestions for initial themes. AN and BAE reviewed the initial themes and subthemes and checked hos they worked together with coded extracts. Following this, AN, BAE, and JM finally defined and approved each theme and subtheme and labeled them. Finally, the authors critical reflected on how our approach to the qualitative data analysis had influenced the developed themes and subthemes. Descriptive examples from the transcripts were selected as quotes to support the analysis/the themes. During the analysis, AN, BAE, and JM consistently challenged each other's interpretations to ensure the results accurately captured the full range and diversity of participants' experiences.

2.5. Patient Involvement

Two patient research partners (PRPs) were involved [23].

The project group evaluated the significance of the involvement of the PRPs in the project guided by the five topics from the‐GRIPP2‐short form [24]. The aim of involving PRPs was to ensure the patients' perspectives throughout the study and that they were represented in all study phases. Our involved PRPs, who have been living with RA for several years, played a crucial role in the study design, particularly in providing invaluable feedback on the information leaflet and interview guide. The PRPs reviewed, commented on, and approved the participants' information for this study and provided significant feedback on the results, discussion, and conclusion, thereby actively contributing to the manuscript.

2.6. Ethics

This study was approved by the National Ethics Committee (Journal‐nr.: H‐23047964) and registered at the Danish Data Protection Agency (P‐2021‐590). Before telephone interviews began, all participants provided either verbal or written (via email) consent before the interviews and were guaranteed anonymity.

3. Results

In total, 16 participants from the MaIA study [15] were contacted (Figure 1). One declined, and one canceled and did not respond to the request to make a new appointment. Thus, fourteen participants were interviewed; five were diagnosed with RA, five had PsA, and four had axSpA and median disease duration 3 years (IQR 10). The youngest participant was 25 and the oldest 75 years old (IQR 24). All five regions in Denmark were represented. For participants characteristics, see Table 2. Even though all participants were asked about COVID, none stated that their experience of loneliness was influenced by COVID.

FIGURE 1.

Flowchart of participants included in the MaIA study [15]. *DANBIO: the Danish nationwide clinical rheumatology registry [25]. **Rheumatoid arthritis, psoriatic arthritis, or axial spondylarthritis. ***Criterion‐based sampling selection with maximum variation for sex, age, IA diagnosis, and geographical representation.

TABLE 2.

Participant characteristics.

Socio‐demographic information	N = 14
Age, median (IQR)	47 (24)
Sex, Female subjects, n (%)	8 (57)
Cohabitation status; living alone, n (%)	7 (50)
Labor marked attachment, employed	5 (36)
Household income, n (%)
Less than 299.999 DKK	5 (36)
300.000 DKK and more	9 (65)
Educational level, n (%)
Basic and short	7 (50)
Long	7 (50)
Disease‐related information
Diagnoses, n
Rheumatoid arthritis (RA)	5
Axial spondyloarthritis (axSpa)	4
Psoriasis arthritis (PsA)	5
Disease duration in years, median (IQR)	3 (10)
Disease impact
Physical function, MD‐HAQ, median (IQR)	0.8 (0.9)
Pain VAS (0–100), median (IQR)	51.5 (46)
Fatigue VAS (0–100), median (IQR)	75 (41)
Quality of life, EQ‐5D‐5L, median (IQR)	0.3 (0.6)
Anxiety, HADS‐A, median (IQR)	13 (2)
Depression, HADS‐D, median (IQR)	13 (4)

Note: Data are from the cross‐sectional study MaIA.

Abbreviations: axSpA, ankylosing spondylitis; EQ‐5D‐5L; EuroQoL five‐dimensional questionnaire (−0.224 to 1); HADS‐A, Hospital Anxiety & Depression Scale – anxiety subscale (0–21); HADS‐D, Hospital Anxiety & Depression Scale—depression subscale, (0–21); MD‐HAQ, Multidimensional Health Assessment Questionnaire (0.0–3.0); PsA, psoriasis arthritis; RA, rheumatoid arthritis; VAS, Visual Analogue Scale (0–100).

We developed three overall themes during our reflexive thematic analysis. In the following section, we present the themes and selected quotes to support our findings. To ensure anonymity, the quotes are presented within three age ranges.

3.1. Loneliness Amplifies the Negative Impact of Arthritis

Loneliness manifested differently among the participants. For some, loneliness arose because of arthritis, manifesting as challenges in accepting the diagnosis and as a feeling of isolation. For others, pre‐existing feelings of loneliness were intensified with the onset of arthritis.

Irrespective of whether the experience of loneliness preceded the diagnosis of IA or not, participants described how loneliness made living with the arthritis diagnosis even more disheartening. For some, loneliness and isolation were followed by a loss of meaning and direction, and they consequently felt depressed about the way their lives had turned out.

Now, all of a sudden, I have time to myself, but I also have this completely unstructured world that I find chaotic. I can't really find a place to start and say, ‘I'll build from here’. (P11, Male, > 65)

The participants described that they had imagined something else and wanted it to be different, but they could not change their situation.

I feel I am … how do you put it, trapped, the arthritis ties you up. (P2, Female, > 65)

Whether loneliness always had been present in the participants' lives or whether it emerged concurrently during the disease course, they unanimously considered loneliness and feelings of despair to be a part of life when living with IA. The participants recounted how IA had a significant negative impact on their everyday lives as they had to cope with pain, fatigue, and a lack of energy. The participants found it challenging to make others understand that one can feel unwell while appearing to be fine on the outside. The lack of understanding from others contributed to a feeling of isolation from other people.

So, I think I feel loneliness when there isn't that understanding that I think should be logical but just isn't there for other people who haven't experienced being chronically ill themselves. (P5, Female, 41–65)

Furthermore, the participants expressed sadness after being diagnosed with arthritis. Specifically, they described difficulties in accepting that the body, which used to be strong and capable of carrying them through, now hindered them from engaging in activities they relished. This led to feelings of loneliness and an avalanche of worries about the possible consequences of physical limitations in the future. Consequently, participants described a process of adjustment where they had to reacquaint themselves with their new body and new identity.

I experienced a kind of grief over losing a body I had before, and then mentally adjusting to a new body and a new identity. That was also, it was difficult. I have come to terms with it better now. (P3, Female, 18–40)

Some participants described experiencing a more challenging and prolonged period of processing after being diagnosed with IA. This experience especially affected the most vulnerable participants, who had already faced various challenges even before developing arthritis, such as struggles with their social life, unhealthy coping strategies, rumination, melancholy, and psychiatric issues like depression and post‐traumatic stress syndrome. For these people, their arthritis added another burden to their already challenging circumstances, regardless of how long they had been living with it.

3.2. Excluding Myself From What I Need the Most

The second theme revolved around the paradox that participants felt forced to opt out of what they needed most, like participating in social contexts on what they perceived to be equal terms with people without IA.

Symptoms such as pain and fatigue made it difficult for them to have the energy to socialize with others. Consequently, they recounted withdrawing from the social part of their lives due to arthritis and felt sad about it, as they were aware that doing so negatively affected their psychological well‐being.

It is like there is no meaning in life. If you don't do anything but go to work and then go home and sleep. I long for something else, but still, I sign off. (P9, Male, 41–65)

Some were worried about encountering obstacles when going out, which occasionally could lead to canceling appointments and social withdrawal.

I thought through all the scenarios. What if the train in the city didn't run? Because I simply cannot walk all the way. Then I get tired before I even arrive. So, all those thoughts were running wild in my mind. (P14, Female, 18–40)

In addition, participants preferred not to participate in social activities unless they could fully engage and be their best selves. On the other hand, some felt lonely for a short period of time when they were diagnosed with IA. However, as time went by, their feelings of loneliness subsided, and although they still experienced it occasionally, it no longer dominated their lives. Both arthritis, loneliness, and varying degrees of psychological distress became reluctantly integrated parts of their lives with arthritis.

In the beginning, I was deeply affected by loneliness, especially because the understanding you would naturally expect from others wasn't there. Something that's hard to grasp unless you've experienced it yourself. But I don't feel that way anymore. Now, in a sense, I've grown accustomed to it. (P5, Female, 41–65)

Because of the unpredictable nature of the arthritis, several participants expressed a fundamental need not to let their arthritis control their lives. Participants described various strategies to regain control. Some preferred to be responsible for planning a given activity to ensure that they were aware of all the circumstances. Some refrained from making appointments if they did not know in advance whether they could bear to carry them out.

At the moment, I don't spend time with others. I only say yes to very few specific things, meaning a few people I know, where I already know how it's going to unfold when we are together. (P11, Male, > 65)

To connect with like‐minded individuals and share experiences regarding arthritis, some joined arthritis groups on Facebook. However, for some, this appeared not to alleviate loneliness. Instead, some were negatively impacted by conversations focusing on negative experiences and feelings related to IA, which increased the perceived burden of living with IA and the sense that it could not be shared with others, even those who were also living with the illness.

What is the first thing you do? If there is no surplus energy, well, then Facebook. What is on Facebook? But for me, it was just the worst place to start because the only thing I got from people was, then there was something wrong with the medicine, and then they felt so bad. It was not very constructive. (P13, Female, 18–40)

3.3. Longing for Loneliness to Be Addressed

The last theme dealt with the participants' initial and ongoing encounters with the healthcare system and how the undercurrent of loneliness was reinforced when their psychological well‐being was not addressed by their rheumatologist or health professionals.

It would be nice if a nurse perhaps took care of the other part as well. The psychological part. I have never been asked about that. (P9, Male, 41–65)

Participants reported that during consultations with either their rheumatologist or a rheumatology nurse, the focus was primarily on clinical examination and blood test results, while no attention was given to them as whole individuals. This frequently led them to perceive that their personal perspectives were overlooked, contributing to a prevailing emotional isolation and loneliness. They expressed a desire to be recognized for more than their arthritis, aspiring to have their broader apprehensions acknowledged as well.

Well, they should see me as a whole and not just see me as a patient with arthritis and only relate to my blood tests and examine my joints. But ask me ‘well, how are you feeling’. (P14, Female, 18–40)

The participants called for understandable explanations about the choices available regarding pharmacological treatment, physiotherapy, counseling with a psychologist, or referral to a pain center.

Well, I'm not doing well, I mean, um, I've been through various biological treatments, and now I've received something, that I actually thought worked a bit, but then they had a conference to decide whether I should continue with it because apparently, they didn't think it worked well enough. (P5, Female, 41–65)

Some participants did praise rheumatology nurses for their proactive approach in referring them to relevant treatments such as pain management, physiotherapy, and lifestyle interventions. Those who had been referred to physical training with other IA patients reported feeling out of place among other participants. They felt their unique situation, age, and health concerns were markedly different from those of other members in the training group, making it hard for them to feel they belonged or fully benefited from the program. This heightened their worries about the future and deepened their sense of disconnection form the group.

I need someone I can relate to and not people who are one or two generations older than myself. (P3, Female, 18–40)

Participants recounted experiencing some level of comorbidity and felt that the healthcare system did not consider the various diseases from a broader perspective. This created uncertainty about whether significant health issues could be overlooked and contributed to a feeling of being alone with the responsibility for their own health. Therefore, they expressed a need for greater coordination and coherence between the various departments involved in their care. They felt that their treatment was fragmented and that they were being tossed around the system.

Then it is like, ‘You should talk to the hospital about that’. And I say, ‘But the hospital told me to talk to my general practitioner about it, and then you kind of feel like you are a plaything that nobody really dares to touch’. (P5, Female, 18–40)

Participants collectively expressed a desire to be able to talk about their problems and a need for greater recognition of the psychological consequences of IA, specifically the impact of mental distress and loneliness on the ability to manage the consequences of IA.

4. Discussion

In this qualitative study based on the experiences of loneliness in people with IA, participants recounted experiencing daily isolation. Some were familiar with loneliness before they were diagnosed with IA, while others described how loneliness accompanied the onset of IA. While we cannot determine causality between IA and loneliness, it was clear from the participants' descriptions that loneliness and the burden of IA were interconnected and potentially mutually reinforcing, which appeared to constitute a mental health burden.

According to the participants, distress in daily life was intensified by increased experience of symptoms, particularly pain and fatigue. It is widely recognized that individuals with IA inherently face periodic symptoms, including pain and fatigue [26]. However, several conveyed how their physical condition influenced their psychological well‐being and vice versa, and how the burden of these symptoms contributed to a sense of loneliness. A longitudinal study aimed at observing the progression and outcomes of RA over time revealed that individuals with higher levels of disability, substantial pain reports, and perceptions of substantial negative effects from RA are more prone to developing depression [27]. Additionally, two recently published cross‐sectional studies [15, 28] investigating the effects of depression and loneliness on medication adherence of patients with axSpA found that those who were non‐adherent reported higher scores on both depression and loneliness.

This emphasizes the importance for patients with IA if HPs adopt a biopsychosocial approach and focus on the patients' physical well‐being regarding optimal treatment and symptom management. This might also include their mental well‐being as well as potential loneliness, as this could potentially help break the cycle of loneliness. Conversely, focusing on addressing loneliness may also contribute to reducing the experienced symptoms and psychosocial well‐being.

The participants' experiences of loneliness presented a paradox; they longed for connections with others but withdrew from social activities due to symptoms. It is well known that patients with IA, especially those suffering from fatigue, adapt their daily lives to the energy they have available [29, 30]. This means that they often stay at home instead of going out and interacting socially. Thus, fatigue can act as a barrier to social participation and interaction, contributing to feelings of loneliness [31]. According to Russell [32], the personal feeling of loneliness significantly affects individuals' overall wellness, surpassing concrete measures of social engagement such as the number of close relationships. For patients struggling with IA and experiencing loneliness, it is crucial to emphasize that this loneliness is often intricately linked to an undesired sense of solitude, as opposed to a voluntary withdrawal from social interactions [33]. Loneliness arises when one feels unwillingly isolated, and its impact on mental well‐being is distinct from voluntary exclusion from social contexts, which does not necessarily have a detrimental effect on one's mental health [33]. Hence, it is important to differentiate between loneliness and social isolation. Social isolation refers to an objective absence of social contacts, whereas loneliness is a subjective emotional experience that can occur even in the company of others [34]. Cacioppo et al. [34] emphasize that loneliness is not merely a consequence of social isolation; instead, it is significantly influenced by individual perceptions and experiences within social contexts. In our study, participants felt unwillingly excluded from social interactions. While not everyone described IA as the cause of loneliness, IA‐related fatigue and pain were described as significant barriers to engaging in meaningful social activities.

Understanding this nuance is imperative in addressing the challenges faced by patients with IA and developing targeted interventions that effectively alleviate the emotional toll of undesired isolation.

In our study, participants desired recognition as complete individuals, where their priorities, including mental well‐being, were recognized by HPs. The remarkable thing about the participants' statements is that they are not asking for things to be fixed or for HPs to make the arthritis disappear. They are asking to be met as whole individuals and to have their suffering acknowledged. As indicated, the neglect of addressing the participants' concerns led to a sense of being overlooked in terms of what was significant to them and induced a feeling of carrying their burden alone. Initially, it may seem something straightforward for HPs to address. However, some HPs tend to adopt a “fix‐it” approach in their practice [35]. Instead, clinicians caring for potentially socially isolated and lonely individuals should educate their patients, suggest treatment options, and participate in collaborative decision‐making [36]. This becomes even more important because patients expressed that their experience of loneliness intensified in their interactions with HPs if they were not met in their loneliness and as whole individuals. Consequently, it underscores the vital need for HPs to address the overall well‐being, including mental health, of individuals during rheumatology consultations. It is worth mentioning that brief validated instruments that can be applied in the screening for loneliness are available [37], and there might be a need for further research to ascertain any potential effects, specifically the impact of screening for loneliness. In addition, HPs may need educational tools to enhance their skills and proficiency to identify mental health concerns [38].

Our results also suggest that the impact of loneliness became even more pronounced when participants felt misunderstood by others, given the invisible nature of the arthritis which led some to seek solace in social media forums for support. Apart from being a space for like‐minded individuals, a qualitative analysis of an online forum [39] also revealed that these platforms serve as spaces where individuals actively seek information and gain deeper insights into their condition. Participants' incorporation of social media platforms can be seen as providing individuals with arthritis with a sense of validation and of belonging. Engaging with a community of people facing similar conditions allows for the exchange of personal experiences [40]. However, studies have demonstrated that loneliness has increased as social media have become more and more widespread [41] suggesting that social media can exacerbate loneliness.

Consequently, people experiencing loneliness may need support with their social media use to ensure it enhances existing friendships and helps them form new ones [42, 43]. Additional research on the role of social media in preventing (or potentially provoking) loneliness in people with IA is warranted. Specifically, it is worth examining how collaboration between rheumatology departments and patient associations, which previously been identified as a tool that can enhance patients' ability to self‐manage [44, 45], can support healthy social media use and/or provision of social support in real life.

This study has several strengths. The incorporation of researcher triangulation (including various health researchers and HPs) enhances the study's credibility [46]. All interviews were conducted by the same interviewer (AN), ensuring similarity in data collection. Furthermore, it is likely that the use of telephone interviews allowed participants to disclose sensitive information with a higher level of discretion [47]. The development of the interview guide benefited from contributions from PRPs and members of the project group, thereby encompassing a multiplicity of perspectives. To enrich the research process, the project group provided input on the findings. It can be seen as a weakness that both PRPs were diagnosed with RA, but their contributions, with both their experience with RA and emotional issues, have been significant in shaping the study, which offsets any potential negatives of both having RA.

In conclusion, participants in our study indicated that the experience of loneliness was worsened by the impact of IA. Specifically, loneliness was experienced as a persisting problem that made the struggles related to arthritis even more difficult. Our study was unable to disentangle the mental health burden from loneliness and symptoms of anxiety and depression (since eligibility required the presence of both). However, participants emphasized that the symptom burden of IA hindered their engagement with others, potentially trapping patients with IA in loneliness and psychological distress. This sense of loneliness was intensified when they felt misunderstood, especially by HPs. They were longing for loneliness to be addressed, highlighting the importance of HPs in recognizing patients as whole individuals with broader concerns beyond their arthritis.

Author Contributions

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be submitted for publication. A. Nordkamp, J. Midtgaard, and B.A. Esbensen had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Study conception and design. J. Midtgaard, A. Nordkamp, A. De Thurah, B. Glintborg, M. Aadahl, P.F. Cromhout, B.A. Esbensen. Analysis and interpretation of data. J. Midtgaard, B.A. Esbensen, A. De Thurah, B. Glintborg, M. Aadahl, P.F. Cromhout, S.B. Vestergaard, L. Lau, C. Yilmaz, B.A. Esbensen.

Conflicts of Interest

B.G.: Research grants (paid to the institution and not related to the present project): Pfizer, AbbVie, Sandoz, BMS. P.F.C. is an employee of Novo Nordic A/S. The remaining authors declare no competing interests.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.