Posted on 24 Mar 2021
Insights into mental health and RA are limited. But patients are increasingly turning online to share their experiences and reach out for support. A group of researchers turned to the popular online community Reddit to learn more about the mental health challenges individuals experience when living with RA. We share their key findings in this review.
Note: This article discusses topics surrounding mental health, some of which may be sensitive for some readers. If you are seeking help, here is a list of mental health resources that you can access within the UK. Not in the UK? Here are some additional resources.
Rheumatoid Arthritis (RA) is a long-term autoimmune condition that causes painful inflammation of joints, sometimes resulting in damage and inability to use the joint properly. This invisible condition has been linked to fatigue, chronic pain, and other co-morbidities such as cardiovascular disease, diabetes, chronic obstructive pulmonary disease.
Some of the fundamental co-morbidities associated with RA are anxiety and depression, which remain frequently under-diagnosed in people with inflammatory conditions. Recent studies estimate that roughly 40% of people diagnosed with RA are likely to have increased levels of either anxiety or depression.
Insights into the mental health challenges of living with RA are limited
Despite the stigma around mental health conditions slowly being lessened in today’s western society, we haven’t yet found ways to fully support people who may be struggling. Conventional research into the mental health of those with RA is limited, perhaps due to the restrictive nature of the methodology needed. It could be because of this lack of research, that the traditional healthcare system may not be well suited to identify the mental health needs of all patients, and sometimes patients may feel that mental health concerns don’t belong with their RA care team.
How can we identify those needs and learn more about the interrelationships between RA and a patients’ mental wellbeing?
Online communities can give researchers insight into the lives of people living with RA
Technology and social media have made it possible to connect with nearly anyone in the world over shared experiences and learn from one another. Many RA patients now turn to the internet to learn more about how to manage their condition and seek advice from others going through similar experiences. Reddit, a popular social news website allows members to openly submit anonymous content to engage in honest discussion, has gained significant popularity over the past years. This unrestricted content has attracted the attention of researchers interested in learning about the unmet needs of various patient, or disease specific communities.
Researchers in Canada have taken advantage of the opportunity to review dozens of threads posted by RA patients where they exchange their feelings, experiences and ask questions, fully anonymously. Throughout the process, the researchers identified 4 different categories that emerged from the pattern of conversations on the website:
1. How to manage your RA
This category is broken down into how patients manage their life with RA, their symptoms, the complexity of prescriptions and medication, as well as discussions around healthcare teams and support networks. The overarching theme from these discussions was the impact that all of these different factors have on one’s mental health. In fact, even the thought of certain treatments or symptoms can cause negative feelings, anxiety and worry for individuals living with RA.
2. How RA impacts relationships and can cause social isolation
This category highlights the differences in expectations friends and family may have of one’s condition Being misunderstood by loved ones or coworkers and being given bad advice to manage the condition were two central topics in these discussions. Lastly, individuals discussed the feelings of guilt they have experienced because of what their condition prevents them from doing with friends and family. They also discussed the burden that having RA can cause on those around them – emotionally, physically and financially.
3. Feeling a sense of loss when living with RA
This category focuses on the feeling of loss that individuals with RA may experience within themselves. These feelings also include a sense of hopelessness, confusion and uncertainty of what will happen next. Some of the topics explored include the inability to handle daily tasks and self-care without pain, having to sacrifice or lose a job because of disability, and the worry about having or caring for children, in the way that one wishes.
4. Managing the emotional burden of RA
The final category that was highlighted in this study focuses on the emotional burden that individuals with RA can experience. There were discussions about making it through the difficult times and learning how to cope and overcome them, both mentally and physically. There were also discussions that spoke about other results of the emotional burden, including suicidal ideation, thoughts and patterns. If you are struggling, please remember that there are resources available to help you.
It is important to highlight that these four categories have complex relationships between them, with RA and mental health remaining at the center. As our mental health state continuously changes, our needs may also change depending on the stage we are in our RA journey. These findings showcase the need for practical recommendations within rheumatology.
Highlighting the mental health impacts that can come from a long-term condition like inflammatory arthritis is critical as we move towards improved overall care. Mental health care should be integrated into the clinical setting just as much as medication prescriptions and physical rehabilitation.
If you are looking for additional resources to help you manage your inflammatory arthritis, the My Arthritis app offers a variety of tools including the ability to track your mood, symptoms, as well as a collection of expert-led courses created specifically to support your inflammatory arthritis journey.
Read the full article here.
Park, J.Y.E., Howren, A.M., Davidson, E. et al. Insights on mental health when living with rheumatoid arthritis: a descriptive qualitative study of threads on the Reddit website. BMC Rheumatol 4, 62 (2020). https://doi.org/10.1186/s41927-020-00163-2