Unlike previous studies (1
), we found that a majority of patients reported that vasculitis negatively impacted their friendships and social participation. Almost 1 in 5 patients reported losing a friend as a result of their vasculitis diagnosis. Moreover, quality of friendships was compromised due to reduced social participation, with 25% of patients engaging in fewer social activities after their diagnosis. Reduced social participation was often attributed to friends’ lack of understanding about vasculitis, vasculitis-related fatigue, lifestyle changes related to medication contraindications and infection precautious, as well as patient withdrawal.
There was great variation in the extent to which vasculitis altered patients’ social networks. While some patients lost all of their friends, others gained new friends in addition to strengthening existing friendships. This variation may be explained by both patient characteristics and disease-related factors. For example, patients with good communication skills may be able to better communicate their situation and needs to friends. Additionally, depression, which has a prevalence of 23.6% in vasculitis patients versus
7.6% of the general population (18
), may affect patients’ ability and confidence to maintain friendships after diagnosis. It is also possible that patients with less severe disease may more effectively maintain friendships because their energy level and physical appearance are not greatly affected. Future research should investigate what factors are associated with patients’ ability to successfully maintain friendships. That way, changeable factors can be identified for interventions designed to help patients maintain healthy friendships after their diagnosis.
Patients noted that vasculitis symptoms and lifestyle changes compromised their ability to participate in social activities to the same extent as they did before diagnosis. Vasculitis-related fatigue is a major issue for patients (19
) and has been more strongly associated with impaired quality of life than clinical measures of disease activity and damage (20
). Diseases with fatigue as a major symptom are often discounted by others (21
). Thus, even though fatigue causes patients a great deal of hardship, friends may not be able to understand this. If patients could share educational materials that specifically discuss fatigue with their friends, friends may then perceive the patient as more credible and be more supportive and understanding when patients decline social events or leave early. Similarly, educational materials that describe drug interactions with alcohol and the need to avoid infection-prone events may serve as a tool for discussing these issues with friends.
Rare diseases like vasculitis may pose an additional obstacle to friendships that is not seen with more common illnesses. When a patient is coping with a well-known disease, others often know what to expect and are able to respond with empathy and understanding. However, in the case of a rare disease like vasculitis, an effort must be expended to learn about the disease in order to understand its effects (22
). Many of the participants in our study noted that friends did not understand vasculitis and how it affected them personally, which has also been found with lupus and rheumatoid arthritis patients (23
). Some patients even expressed that they would rather have cancer instead of vasculitis because then they would not have to explain the disease to others. Patients’ reticence to talk to their friends about vasculitis suggests that communication-focused interventions are needed to help patients act as their own advocates in explaining their disease to their friends.
Not all changes to friendships were negative; 47.1% of patients reported positive changes, which included feeling closer to friends, gaining new friends, and receiving emotional and instrumental support. Indeed, many patients commented that losing some friendships was less painful when they had “true friends” who stood by them during and after their diagnosis. This finding is in accord with previous studies, which found that the quality of social support – rather than the number of relationships – was associated with better outcomes for women with rheumatoid arthritis (24
). Relationships with other chronic disease patients were especially meaningful due to shared understanding about the limitations caused by chronic-disease. Unfortunately, because vasculitis is an extremely rare condition, patients often do not have access to a local vasculitis support group. However, online support groups may help patients identify and connect with other patients. Because friendships with other vasculitis patients were noted as especially beneficial, health care providers should consider providing patients with Internet-based support resources to help them connect with others.
This study has several important limitations. First, like all qualitative studies, our results are not generalisable to the greater population. Generalisability is particularly limited because all participants had access to the Internet and online support resources. The impact of vasculitis on friendships may be more severe for patients who do not have access to online resources. Additionally, our results may be biased if patients who accessed the study survey had fewer friends than patients who did not access our survey. For example, patients who were socially isolated or functionally impaired may have had fewer friends and spent more time online than individuals who were physically able to attend social events and maintain key friendships.
Second, our data was derived from written answers to an open-ended question, so we could not probe for additional information about changes to friendships. However, having people’s written responses allows us to capture their intended emphases and express their meaning verbatim without risk of transcriptional error. Because only 11 patients did not respond to the friendship question, we have a broad range of patient perspectives. Last, our data are limited to patients’ subjective perspectives of changes to friendships. Future studies should document the experiences of friends to provide a more holistic assessment of how friendships are impacted by vasculitis.