Online health forums and relationships with empowering clinicians reduce the isolation from living with a systemic autoimmune disease and can improve medical knowledge and resilience.
This in-depth analysis of the LUPUS UK forum, led by Melanie Sloan from the BSG and involving forum members, LUPUS UK, psychologists and leading rheumatologists, found ‘Invalidation’ was the key theme, including from society, clinicians and the patients themselves. Forum members regularly discussed a widespread lack of knowledge of the disease amongst both wider society and clinicians. This was often combined with a lack of visible symptoms (despite frequent organ damage) and led to misdiagnoses/delayed diagnosis, disbelief and dismissal, with many being told ‘but you don’t look sick’.
Self-doubt was frequently expressed by patients during the years they spent journeying through the ‘diagnostic wilderness’, which took an average of 6-7 years. The forum’s role in providing support in persisting with the search for diagnosis was widely discussed:
‘Things went on so long that I started to doubt my own sanity!…I completely lost the ability to stand up for myself or discuss my concerns…The forum has helped keep my confidence up long enough to make sure I’m really being heard…Having a doctor who listens makes such a huge difference’ (Female, 30s)
Much appreciation was expressed for clinicians who provided compassionate support and validation during the diagnostic uncertainty phase:
[GP]’ was the best example of a compassionate, intelligent and very wise Doctor giving me the wonderful care and sympathy despite no definitive diagnosis. A positive Doctor gives as much psychological support as any drug’ (Female, 60s)
Some physicians, especially lupus specialists, were reported to take the holistic view and co-ordinate effective multi-disciplinary care for these patients, who often have complex multi-system disease. However, a more common occurrence was for patients to report being treated as a collection of unconnected body parts being passed like an ‘unwanted parcel’ around the ‘ologies’ with ‘merry go rounds’ of superficial investigations and a frequent failure to ‘join the dots’ to both achieve prompt diagnosis and effective management of the disease.
Although there were many inspiring posts from people who had found a sense of acceptance and achievement by adapting activities around the limitations of the disease, the majority of members had great difficulty in many aspects of their lives, often exacerbated by a continued ‘battle’ to obtain effective medical support:
‘At what point does one’s use in the world expire with this disease…what is left of ‘me’ and do I become a ‘burden’…lost and worthless…my quality of life is slowly dropping away – everything that I am seems to be disappearing in this horrible set of conditions I have and the awful way we have to prod and poke the medical profession to help’ (Female, 50s)
This research study, in conjunction with the two research papers previously published this year (Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases and Is it me? The impact of patient–physician interactions on lupus patients’ psychological well-being, cognition and health-care-seeking behaviour), used ethnography (long-term immersion in the forum by the patient research team) and thematic analysis to identify unmet needs and the scale of the problems from the patient perspective. The next stages the team will be engaged in will be to trial interventions to mitigate the psychosocial impact of the disease and to improve understanding between both parties in the medical relationship.
This study also exemplifies the great value of having people with the disease as collaborators and co-authors.
The aim of this study was to give patients a voice and assist clinicians in gaining more understanding of the impact of the disease and medical interactions on their patients. Something that was very important to me was fully involving those who had most knowledge of the disease – those living with it. Our highly engaged and brilliant patient- research team ensured much deeper insight and understanding when interpreting the patient view”
– Melanie Sloan, lead author, Behavioural Science Group, Primary Care Unit, Cambridge University
We’re extremely grateful to everyone involved in this essential research project. The paper encapsulates the shared experiences of people living with lupus and importantly identifies issues faced by many and provides recommendations for improved patient care and wellbeing. We’re pleased to see the value of online patient communities and forums for people living with chronic conditions like lupus. This research project has also demonstrated a gold-standard for patient involvement and benefits greatly from it.”
– Paul Howard, Chief Executive of LUPUS UK
This research was part of a wider study funded by LUPUS UK.
Read the study
M Sloan, M Bosley, M Blane, L Holloway, C Barrere, D D’Cruz, C Walia, F Naughton, P Howard, S Sutton, C Gordon: ‘But you don’t look sick’: a qualitative analysis of the LUPUS UK online forum, published online, Rheumatology International, 27 October 2020
Please contact Lucy Lloyd, Communications Manager, Primary Care Unit