In this section you will find:
- What is resilience? What’s the meaning of bouncing back?
- Is Resilience a Skill or Character Strength?
- What are the characteristics of the Resilient Person?
- Why is resilience important when facing adversities and challenges?
- What types of resilience exist?
- What are the 7Cs of resilience?
- How to Measure Resilience?
- How do I develop my resilience?
- Toolkits, guides, and tips
- Resilience in chronic disease: where do we stand for rare diseases?
- Coping strategies and studies
How can you help our CDG community? Is easy! Share among your social media and other channels the information we make available within this section and website. This raises awareness, accelerates diagnosis, and secures better care and management for our CDG children and adults!
Although the world is full of suffering, it is also full of the overcoming of it.
By Hellen Keller
What is resilience? What’s the meaning of bouncing back?
According to the American Psychological Association (APA), resilience is the ability to successfully adjust to severe life circumstances, by being flexible and adapting to challenges in mental, emotional, and behavioral ways. In other words, is the ability to recover from a life trauma or adversity when you have all the reasons to shut down, but you fight on (bounce back).
Do not judge me by my success, judge me by how many times I fell down and got back up again.
by Nelson Mandela
Is Resilience a Skill or Character Strength?
We know that we all have personality traits that enable us to be more resilient at different times in life, but the research is clear:
It’s not something you’re born with. It’s something that gets built over time.
Dr. Jack Shonkoff (MD and professor at Harvard University)
Resilience is not an innate characteristic - it is a complex combination of internal and environmental factors, such as genetics, physical fitness, mental health, environment, and social support. Resilience is a skill that can be taught, learned, and practiced. So, everyone has the capacity to be resilient when exposed to a favorable environment and people.
What are the characteristics of the Resilient Person?
It is challenging to identify the factors that contribute to someone's resilience.
Resilience can be learned, just like any other skill, but it can also be influenced by particular personality traits and outside factors. Research shows that resilience is created through controlled exposure and is never achieved through avoidance. Over time, this is sometimes referred to as the "steeling" effect. Read more: Rutter, M. (1993). Resilience: Some conceptual considerations. Journal of Adolescent Health, 14(8), 626–631.
If a person has survived a few terrible circumstances in life, they are more resilient when faced with future misfortune. Maurice Vanderpol, a pioneer in the field of resilience research, used the term "plastic shield" to describe a set of skills for handling psychological stress. The following research entitled “Increasing resilience in adolescents: the importance of social connectedness in adventure education programmes” also shows that a child's sense of belonging is good news for enhancing resilience.
A resilient person shares several positive characteristics like:
- Strong internal locus of control
- Good communicator
- High emotional intelligence and management
- Strong problem-solving skills
- Maintain calm under pressure
- Optimistic, realistic and positive
- Have self-confidence and self-esteem
The following resources might be of interest for you:
Article from New York Times What Makes Some People More Resilient Than Others
Why is resilience important when facing adversities and challenges?
Because if you have resiliency, you will be able to face and overcome the adversities and challenges in your life and even use them to strengthen yourself. Resilience does not make the difficulties disappear or resolve all problems – resilience will help you to adapt, adjust, and stay on your feet.
Association between resilience and longevity
There is growing evidence that suggests that resilience significantly contributes to longevity at all ages, and it becomes even more profound at very advanced ages. According to some reports, elderly people are more likely to deal with declining health and function, the loss of relatives and friends, and a smaller social network. Also, older generations have an increased priority on preserving independence and maintaining the best possible health, when full recovery is not possible. For example, people between 94-98 years and with high levels of resilience were 43.1 % more likely to reach 100 years than those with low adaptability.
Learn more about:
- Zeng Y, Shen K. Resilience significantly contributes to exceptional longevity. Curr Gerontol Geriatr Res. 2010;2010:525693. doi: 10.1155/2010/525693. Epub 2010 Dec 6. PMID: 21197075; PMCID: PMC3004383.
- Shen K, Zeng Y. The association between resilience and survival among Chinese elderly. Demogr Res. 2010 Jul 16;23(5):105-116. doi: 10.4054/DemRes.2010.23.5. PMID: 21113419; PMCID: PMC2990503.
- Davidson J. Resilience: Taking its Measure Across the Life Spam. Am J Geriatr Psychiatry. 2021 Dec;29(12):1286-1288. doi: 10.1016/j.jagp.2021.04.010. PMID: 34045118
- Borras C, Ingles M, Mas-Bargues C, Dromant M, Sanz-Ros J, Román-Domínguez A, Gimeno-Mallench L, Gambini J, Viña J. Centenarians: An excellent example of resilience for successful ageing. Mech Ageing Dev 2020 Mar;186:111199. doi: 10.1016/j.mad.2019.111199. PMID: 31899226
- Martin P, MacDonald M, Margrett J, Poon LW. Resilience and longevity: Expert survivorship of centenarians. Published online by Cambridge University Press: 06 December 2010. Edited by Prem S. Fry and Corey L. M. Keyes
What types of resilience exist?
Most people don't know that there are four types of resilience, and each of them may have an impact on a person's capacity to handle different types of stress. In addition, by understanding these different types, you may evaluate how well you are performing for each one and then take steps to strengthen any weaknesses you find.
The 4 types of resilience are: physical, mental, emotional and metal:
What are the 7Cs of resilience?
In 2006 the American Academy of Pediatrics published a 5Cs model of resilience based on the Positive Youth Development movement. Later, Kenneth R. Ginsburg, MD and Co-Director of the Center for Parent and Teen Communication at Children's Hospital of Philadelphia made an adaptation of the 5Cs and developed the 7Cs model. The main goal was to deliver a practical method for parents and communities to prepare children to succeed.
The 7 Cs of resilience are:
In the next video, you can watch Dr Kenneth R. Ginsburg himself, explaining and contextualizing each “C” of the resilience model.
How to Measure Resilience?
There are many different ways to measure resilience. In the last decades dozens of scales were developed aiming to measure resilience in different contexts for a specific population, intervention or outcomes, based on different components and built on different theories. Therefore, one resilience scale could be more suitable than another depending on the situation in which it will be used. Among the frequently used resilience scales, the most popular are: the Brief Resilience Scale (BRS) and the Brief Resilient Coping Scale (BRCS), with 6 and 4-items, respectively. Both these scales have been translated into different languages and adapted for different study samples, with various medical conditions. For example, you can see the BRS below.
The BRS is a simple, self-rating tool that individuals can use to assess their own levels of resilience. BRS contains three positively worded items, and three negatively worded items and a number is assigned to each response. People are asked to rate how much they agree or disagree with these six statements and will receive a resilience score between 6 and 30 after adding everything up.
- How do I develop my resilience?
Building resilience is an individual and complex process that requires time and intentionality. There is no one-size-fits-all method for increasing resilience; rather, it requires a combination of inner strengths and outer resources.
In that sense, several experts in the field, like psychologists, physicians, researchers and other healthcare professionals, individually or in combination with associations and organizations, have developed toolkits, guides and tips aiming to guide and help people to build resilience.
For example, according with APA there are four basic core components that can empower your resiliency:
- Build connections - prioritize relationships with people that care about you and join a group that provides social support and can help you reclaim hope.
- Foster wellness - take care of your body, practice mindfulness and avoid negative outlets.
- Find purpose - help others, be proactive, move toward your goals and look for opportunities for self-discovery.
- Embrace healthy thoughts - keep things in perspective, accept change, maintain a hopeful outlook and learn from your past.
It is important to highlight that sometimes you can get stuck or have trouble making progress on the road to resilience, so get professional help through a licensed mental health professional such as a psychologist to assist you to develop a suitable strategy for moving forward.
Besides the APA website, there are other several websites with general tips to help you to build your resilience:
- Verywellmind shares about 10 Ways to Build Resilience
- HCPlive presents 10 Ways to Build Resilience based on APA website content
- Dr Block from Health Psychology Center shares 5 factors that promote resilience
- Psychology today describes 9 Ways to Be Resilient in Tough Times
- Help Guide shares 5 Tips to Surviving Tough Times by Building Resilience
- Everyday Health describes several Top Factors That Build Resilience
- Kentucky Counseling Center shares an article with 9 tips to Build Mental Resilience
Also, there are some guides and toolkits available to build resilience regarding specific groups of people:
The following websites may help you exploring more about:
- Verywellmind defines What is Resilience
- The Jed Foundation, the Psychreg and Verywellmind share Characteristics about Resilient People
- Elite Learning describes the association between Resilience and longevity
- Better Health Solutions writes an article about the Four Types of Resilience
- Positive Psychology shares How to measure resilience: 8 resilient scales
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?
- 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:
Joana Poejo (Medical writer CDG & Allies FCT, NOVA University, World CDG Organization and Portuguese Association for CDG).
Vanessa Ferreira and Ana Verde (collaborators at CDG & Allies FCT, NOVA University).
Marisa Godinho (collaborator at CDG & Allies FCT, NOVA University).
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