Written by Gemma Boak
Social media platforms, such as Instagram, are particularly powerful when it comes to empowering psoriasis patients and reducing social stigma. Members of the community share images of themselves and their psoriasis in community settings, reaffirming the message that it is ok to expose your lesions in public.
Psoriasis is a complex disease, which can permeate every aspect of a patient’s life. This chronic immune-mediated disease typically manifests as raised erythematous scaly plaques that can have a detrimental impact on psychological health.1 The physical manifestation of psoriasis means patients frequently encounter discrimination and stigmatisation,2 which can lead to the avoidance of certain social situations, feelings of loneliness, and increased stress. Increased stress is a notable problem because evidence shows that stress can exacerbate existing lesions and is a frequent trigger for a flare.3,4 It is not surprising that depression and anxiety are more prevalent in psoriasis patients,5 particularly given the perpetual cycle in which people can find themselves, with increasing symptomatology, leading to further social isolation.
Several studies investigate the impact of stress-reduction therapies in treating psoriasis.6-8 These studies concluded that completing programmes that reduce stress as an adjunct to usual treatment can significantly reduce the severity of psoriasis and increase patients’ quality of life by reducing psychological distress. This suggests that activities that reduce stress, can be a beneficial addition to traditional treatment protocols.
Why Social Media?
Living with a chronic disease is emotionally challenging and can require resilience and the ability to adapt to the unpredictability of the disease. It can be liberating to talk openly and bond over the ‘shared truths’ of living with psoriasis. Social media brings like-minded individuals together who act to educate each other in the form of question and answer style posts and shared experiences. Using hashtags on Instagram and joining private psoriasis groups on Facebook can bring people with similar interests together and provide a group therapy-style setting to relieve emotional stress, which is known to aggravate the disease.9 These settings also tap into social comparison theory enabling users to feel hope and inspiration from fellow community members who are doing better than them, and gratitude when encountering those who are less well off.
Stigmatisation is a significant problem affecting most sufferers.10 The World Health Organization (WHO) has identified that social media can be a useful tool for increasing the awareness of psoriasis as a non-communicable disease.11 For charities such as the Psoriasis Association, social media platforms like Twitter, Facebook, and Instagram are instrumental in allowing them to publicise the condition and support those affected by it.
For most people, social media is easily accessible. Over 70% of all internet users engage with social media,12 which has led to a shift from traditional internet searches to user-centred shared experiences.13 Social media also removes some of the barriers that exist in accessing a specialist such as availability and cost, though medical advice should only ever be taken from a qualified doctor.
I have used social media to support myself in different ways depending on the severity of my psoriasis. During severe flares, social media provided respite for me when the itching was preventing me from sleeping. Talking to other members of the community online distracted me from the itching, provided me with emotional support, and introduced me to new strategies to use to help me get through the day.
Why Should we be Cautious?
I would be naïve to acknowledge only the positive impacts of social media. There are genuine concerns about the quality of information shared on social networks. Some advice is actively dangerous, and not everyone can filter information. It is also the case that some people experience a worsening of mental health symptoms as a result of encountering depressing stories.14 I try to filter this by using Instagram over Facebook, where the community is more optimistic. Additionally, I also follow dermatologists and research scientists on Twitter to keep informed of the most up-to-date, high-quality information.
Instagram: A Case Study
Instagram is a social media platform that is based on sharing images. This has been an accessible medium for psoriasis sufferers to promote awareness of their condition. Posting images using the hashtags #getyourskinout and #psoriasiscommunity provide a clear message that it is ok to get your skin out, that psoriasis is part of who we are, and that this is ok. Stigma is not a symptom of psoriasis but public misunderstanding, and we need to address this. Unfortunately, last month Instagram started blocking core hashtags used by the psoriasis community, which undermined efforts to increase social acceptance and this has unintentionally led to further stigmatisation. The backlash from the community can be seen on Twitter where the hashtags were still active, with tweets directed at Instagram asking: “Am I not beautiful enough?” and a petition set up by the Psoriasis Association asking Instagram to reinstate the hashtags was shared across social media, with support from other charities such as The Vitiligo Society and The British Skin Foundation.
It is a powerful coming together of a community, but my concern is for the people we do not hear from, those who are not yet confident to put their images on the internet, and those whose voices we cannot hear. What message are they taking from this? For me, it is clear that social media has the potential to be a useful tool in reducing social stigmatisation and reducing psychological stress when used correctly, but it is in itself not enough to address the psychosocial challenges faced by psoriasis sufferers. In addition, ineffective protocols used by social media to moderate content have the potential to unintentionally undermine advocacy efforts.
- Moon HS et al. Psoriasis and psycho-dermatology. Dermatol Ther. 2013;3(2):117-30.
- Russo PA et al. Psychiatric morbidity in psoriasis: A review. Australas J Dermatol. 2004;45(3):155-9.
- Gaston L et al. Psoriasis and stress: A prospective study. J Am Acad Dermatol. 1987;17(1):82-6.
- Hunter HJ et al. Does psychosocial stress play a role in the exacerbation of psoriasis? Br J Dermatol. 2013;169(5):965-74.
- Kurd SK et al. The risk of depression, anxiety, and suicidality in patients with psoriasis: A population-based cohort study. Arch Dermatol. 2010;146(8):891-5.
- Kabat-Zinn J et al. Influence of a mindfulness meditation-based stress reduction intervention on rates of skin clearing in patients with moderate to severe psoriasis undergoing phototherapy (UVB) and photochemotherapy (PUVA). Psychosom Med. 1998;60(5):625-32.
- Fordham B et al. A pilot study examining mindfulness-based cognitive therapy in psoriasis. Psychol Health Med. 2015;20(1):121-7.
- Fortune DG et al. A cognitive-behavioural symptom management programme as an adjunct in psoriasis therapy. Br J Dermatol. 2002;146(3):458-65.
- Seng TK, Nee TS. Group therapy: A useful and supportive treatment for psoriasis patients. Int J Dermatol. 1997;36(2):110-2.
- Hrehorów E et al. Patients with psoriasis feel stigmatized. Acta Derm Venereol. 2012;92(1):67-72.
- World Health Organization. Global Report on Psoriasis. 2016. Available at: http://www.searo.who.int/publications/bookstore/documents/9241565187/en/. Last accessed: 26 February 2018.
- Statista. Number of social media users worldwide from 2010 to 2021 (in billions). Available at: https://www.statista.com/statistics/278414/number-of-worldwide-social-network-users/. Last accessed: 23 February 2018.
- Merolli M et al. Health outcomes and related effects of using social media in chronic disease management: A literature review and analysis of affordances. J Biomed Inform. 2013;46(6):957-69.
- Takahashi Y et al. Potential benefits and harms of a peer support social network service on the internet for people with depressive tendencies: Qualitative content analysis and social network analysis. J Med Internet Res. 2009;11(3):e29.