This post is by guest blogger Anna Fialkowska
“This is the skin I live with. This is the skin I take with me wherever I go. This is the skin I wear without a choice. This is the skin I never forget about, the skin that causes pain, embarrassment and guilt. This is the skin that ruled my life, changed my relationships, my sense of self-worth.”
This is the beginning of the poem that I have written after ten years of living with rosacea, which is a common chronic inflammatory condition of the facial skin characterised by immune disfunction and neurovascular dysregulation. The prevalence of the condition ranges between 2.2% to 22%, depending on the study (1, 2). Research carried out within clinical settings seems to provide lower rates of sufferers than population-based studies suggesting that a significant number of individuals may never seek medical care. The cause of the condition is uncertain, however there is some evidence showing a genetic component in rosacea, supported by twin and genomic association studies (3,4). UV exposure was also shown to play a role in the cause of the condition by its stimulating effect of the innate immune responses linked to rosacea (5).
The most common symptoms include flashing, persistent facial redness, papules and threadlike red lines or patterns on the skin (6). Additionally, individuals suffering from rosacea often report a sensation of stinging or burning, facial dryness, scaling and ocular sensitivity. The condition is characterised by its high changeability, remissions and exacerbations. Various environmental and endogenous factors have been linked to the aggravation of the symptoms, including alcohol consumption, heat exposure, smoking or spicy food (7). Moreover, psychological distress has been linked to an exacerbated symptomatology observed among rosacea sufferers. Nevertheless, the interaction between rosacea and psychological distress is much more complex than what initially assumed. Beyond, a detrimental effect of stress on rosacea symptoms, the condition itself leads to significant mental health complications. Similarly, to other skin conditions, such as psoriasis or acne, rosacea sufferers report lower quality of life (8) and they are at the increased risk of depression and anxiety (9,10).
Although, this chronic skin condition in most of the cases develops at the age of 30-40, my first symptoms started occurring when I was 16-17 year old girl, loving sports, school, travelling and my social life. I loved being ‘busy’ and spending time with my friends and family. I played volleyball and handball, did a lot of running and was always a high achieving student. I enjoyed my acting and dancing classes. I performed in front of large audience and was always described by my friends as a loving, charismatic and confident individual. However, this has changed substantially with an occurrence of my initial symptoms and the diagnosis of rosacea. My skin became very sensitive and highly reactive to various external factors, such as sun exposure, cosmetic products or food allergens. It was often red, swollen and very painful, especially when I was exposed to a high temperature, dry air or spicy foods. Stress was also one of the main triggers of the flare-ups. I was often ashamed by my appearance and struggled to cope with the intense pain caused by the condition. As a consequence, I started avoiding social interactions, decreased my participation in sport and my school attendance dropped. I was becoming isolated and my mood significantly changed. I could not comprehend why this was happening to me. I was often sad, frustrated and simply wanted to ‘have my life back’. But nothing was the same as previously. I was prescribed various medications, however only a short-term improvement was observed. I felt helpless and without support of my parents and close friends my life would be potentially very different than it currently is.
A few years ago, I have received laser treatments, which brought some ease and decreased my symptoms. Nevertheless, the treatment was very costly, required many sessions, has to be repeated yearly and involved a lot of pain and a long period of recovery. Alongside the aforementioned treatment I took some meditation classes, tried acupuncture and put in a lot of effort to accept my condition and symptoms that I had to face. My symptoms have not disappeared, but I established a new ‘relationship with them’. I accepted their presence, developed new coping strategies and decided to enjoy the activities that I loved, regardless of the sensations that I was experiencing. I started running, cooking, travelling and enjoying my social life. I have completed my BSc and MSc course in Psychology, and I am currently finishing my first year of a doctoral training in Health Psychology. I believe that rosacea made me a stronger individual, sensitive to my environment and passionate about the holistic management of chronic conditions.
“This is the skin I live with. This is the skin that made me who I am right now. Sensitive, passionate, loving and appreciating the beauty of life. This is me, who can sense every gust of wind, lightness of the clouds. This is my skin that made me breath deeper, love stronger and fuller.”
I have made a lot of adjustments, for instance decreasing the intensity of my physical activities, avoiding certain foods, decreasing the temperature in the house and use cosmetics that are appropriate for my skin type. Although, it all sounds very straight forward, the management of the condition is not as easy as it seems. A lot of people believe that skin conditions are only physical complications affecting the way people look. However, there are many more factors that require thorough consideration when supporting individuals with chronic skin conditions. An effect of skin disorders on individuals’ social life, romantic relationships, self-esteem and quality of life should not be underestimated. Unfortunately, the current treatment is mainly based on a medical model (11). Psychological support is often forgotten, which puts individuals at a high risk of poor metal health. The feeling of isolation, perception of not being understood and the feeling of helplessness are very common among those who suffer from chronic skin conditions. I strongly believe that significant changes within the health care system need to be made. An introduction of a holistic approach, promoting holistic screening and pharmacological treatment accompanied by psychological support, may provide highly promising results, especially among those who are at the increased risk of psychological distress.
About Anna Fialkowska
Anna Fialkowska is a Trainee Health Psychologist, is completing her doctoral training at the University of the West of England and currently works as a Heath Improvement Practitioner. She has worked within the field of mental health dysfunction and cognitive rehabilitation over the last six years. Her main areas of research include the development of behaviour change interventions, the impact of stress on individuals’ physical health and the effect of chronic conditions on psychological well-being.
References:
- Schaefer, I, Rustenbach, S.J, Zimmer, L., Augustin, M. (2008). Prevalence of skin diseases in cohort of 48,665 employees in Germany. Dermatology, 217(2), 169–172.
- Abram, Silm, & Oona (2010). Prevalence of rosacea in an Estonian working population using a standard classification. Acta Dermato-Venereologica, 90(3), 269-73.
- Aldrich, N., Gerstenblith, M., Fu, P., Tuttle, M.S., Varma, P., Gotow, E., Cooper, K.D., Mann, M., Popkin, D.L. (2015). Genetic vs environmental factors that correlate with rosacea: A cohort-based survey of twins. JAMA Dermatology,151 (11), 1213-9.
- Chang, A.L.S, Raber, I, Xu, J., Li, R., Spitale, R., Chen, J., Kiefer, A.K., Tian, C., Eriksson, N.K., Hinds, D.A., & Tung, J.Y. (2015). Assessment of the genetic basis of rosacea by genome-wide association study. The Journal of Investigative Dermatology, 135(6), 1548-55.
- Del Rosso, J.Q. (2012). Advances in understanding and managing rosacea, part 1: connecting the dots between pathophysiological mechanisms and common clinical features of rosacea with emphasis on vascular changes and facial erythema. Journal of Clinical and Aesthetic Dermatology, 5(3), 16-25.
- Wilkin, J., Chairmana, M.D., Dahl, M., Detmar, M., Drake, L., Feinstein, A., Odom, R., Powell, F. (2002). Standard classification of rosacea: Report of the national rosacea society expert committee on the classification and staging of rosacea. Journal of American Academy of Dermatology, 46(4), 584-7.
- Clark, C. (2011). Rosacea: causes and treatments. The Pharmacological Journal, online. Retrieved from: https://www.pharmaceutical-journal.com/learning/learning-article/rosacea-causes-and-treatments/11076207.article