The following websites may help you exploring more about:
The following scientific articles may complement your learning about this topic:
- Pulciani S, Nutile E, Taruscio D. Patient Associations: a driving force for Rare Diseases research. Resilience: a driving force for Patient Associations. Ann Ig 2018; 30: 307-316. doi:10.7416/ai.2018.2222
- Schwartz CE, Michael W & Rapkin, BD Resilience to health challenges is related to different ways of thinking: mediators of physical and emotional quality of life in a heterogeneous rare-disease cohort. Qual Life Res 2017, 26, 3075–3088
- Windle G, Bennett, KM & Noyes, J. A methodological review of resilience measurement scales. Health Qual Life Outcomes 9, 8 2011. doi.org/10.1186/1477-7525-9-8
- Fung Sf. Validity of the Brief Resilience Scale and Brief Resilient Coping Scale in a Chinese Sample. International Journal of Environmental Research and Public Health. 2020; 17(4):1265. doi.org/10.3390/ijerph17041265
- Smith BW, Dalen J, Wiggins K. et al. The brief resilience scale: Assessing the ability to bounce back. Int. J. Behav. Med. 2008. 15, 194–200. doi.org/10.1080/10705500802222972
Although the world is full of suffering, it is also full of the overcoming of it.
By Hellen Keller
Resilience in chronic disease: where do we stand as for rare diseases?
- Studies
- Coping strategies
Resilience is an important attribute for patients who face the challenge of a chronic disease or rare disease (RD). In the last years, the bio-psycho-social investigation in the medicine field has substantially increased trying to understand how patients gain or lose resilience resources during all stages of disease development (diagnosis, treatment and ultimately survival of a chronic disease). Findings have demonstrated the importance of psychological and social resilience in the move forward with chronic disease. Several studies on different types of chronic diseases like cancer and Parkinson showed that patients with higher levels of resilience are more stable and adapt easily to their social environment, as well as having better functional capabilities. Furthermore, they showed less severe symptomatology, higher pain threshold, they were less tired and suffered less from depression and anxiety, which leads consequently to a better quality of life.
In the case of RD, the state of vulnerability is significantly higher both for patients and family members – in addition to organic disorders associated to specific pathologies, RD frequently cause emotional fragility, anxiety, depression, problematic and dysfunctional behaviors, antisocial behaviors and other conditions. This often create highly unpleasant moods and emotions in the family, like disbelief, rage, melancholy, a sense of powerlessness, remorse, and loneliness. To overcome all these physical and psychological challenges, it is important to build and maintain a remarkable sense of resilience. A recent cohort study on RD patients demonstrated that people with higher levels of resilience are associated with better physical and emotional functioning. However, contrary what happens with chronic diseases, it is clearly evident the lack of biomedical research due to the low RD prevalence in the world, which hinders the recruitment of research cohorts that are adequate and capable of producing reliable scientific results. To overcome this gap, in the last years, several RD patient associations have been developed with the main goal to established support networks to achieve better care, improve the quality of life and also to promote and encourage the biomedical investigation by increasing the engagement between patients and families and stakeholders. Moreover, usually patient associations include experienced medical doctors and psychologists who can help strengthen the resilience of their members with strategic approaches based on the scientific knowledge and awareness of their emotional resources.
How can you face a chronic disease using coping strategies?
- You can start by talking with your doctor - write all questions and discuss with him all your doubts. He is the right person to inform and guide you through the specific steps that will optimize your health.
- Control what you can control - maybe you cannot control some features of your disease, but you can choose to eat a healthy diet, take medications as described, do some exercise, yoga, meditation and practice mindfulness.
- Build a strong and positive supportive network - ask family and friends to help you to manage your disease. Participate and share your experience within your community and/or associations.
You can find other coping strategies in the following websites:
You can also watch these following videos with coping strategies to overcome chronic diseases:
