NGF Community Blog

Resiliency and Gaucher Disease: Promoting Positive Outlooks and Outcomes

There is no standard definition for “resiliency” as it applies to medical science. But most healthcare providers view resiliency as the ability to “bounce back” after a setback. Resilience means you adapt easily to change and negative circumstances. Drawing from your own inner strength, you respond to stress and new situations in a positive and productive way while also maintaining a realistic outlook on the future.

Considerable research shows resiliency is instrumental in promoting positive outcomes in people living with chronic diseases like Gaucher disease. This may be tied to resiliency’s positive effect on self-management, or the steps you take every day to manage Gaucher disease. After all, if you’re more resilient, you are more likely to practice positive self-care activities, like eating a nutritious diet and sticking to your treatment schedule. Research shows that, for some people living with chronic illnesses, greater participation in self-management actually slows the progression of their disease. For others, self-management helped control symptoms and enhance quality of life.

Ten core resiliency traits are associated with an increased ability to adapt to stressful situations, including dealing with a chronic illness like Gaucher disease. While you may not embody all 10 traits now, NGF and other Gaucher community resources make it easy to develop your own personal resilience in the face of this disease.

10 Resiliency Traits

In the book “Resilience: The Science of Mastering Life’s Greatest Challenges”, doctors Southwick and Charney discovered these 10 common traits of resiliency among the patients they treated:

  1. Realistic optimism
  2. Facing fear
  3. Moral compass
  4. Religion and spirituality
  5. Social support
  6. Resilient role models
  7. Physical fitness
  8. Brain fitness
  9. Cognitive and emotional flexibility
  10. Meaning and purpose

Researchers view many of these traits as “protective factors”, directly relating to health outcomes and specific biological processes, such as neurotransmission and immune function. Each of these traits plays a unique and influential role in your ability to adapt to stress. For many people, resiliency helps drive treatment in a positive direction, making it easier to stick to treatment plans and engage in various self-care activities, like exercise. Actively developing the traits of resiliency may also help improve your quality of life by changing your perception of your illness.

Struggling to Develop Resiliency

While Southwick and Charney’s 10 traits are common among the most resilient patients, you may need help developing one or more of these factors in your own life. It’s very common to struggle with developing realistic optimism, especially since there is no cure for Gaucher disease. Additionally, fears over insurance coverage, changes to the Orphan Drug Law, and concerns for possible lack of funding for social support programs like the Children’s Health Insurance Program (C.H.I.P.) all take a toll on your ability to be resilient.

But even though there are significant challenges to developing a strong sense of resilience, it’s still possible to cultivate this mindset. Nancy Masters, Doctor of Medical Humanities, spent time researching resiliency among people living with Gaucher disease, their caretakers, and other relatives and friends. In her experience, there are two factors above all others that help develop and promote resiliency: community and knowledge.

Two Keys to Resiliency

Masters knows first hand how difficult it can be to become resilient in the face of Gaucher disease. Both her daughters were diagnosed with the condition in 1983. Since then, she and her family have been actively involved in the Gaucher community. Over time, she noticed that while some people may be more naturally resilient than others, it’s still possible to promote and develop resiliency. This is especially important for people just learning about Gaucher disease.

Masters says, “There seems to be one common factor that promotes resiliency above all others. People who are active in the Gaucher disease community, either in-person or online, seem to be most resilient in the face of this condition. The Gaucher disease community, which includes patients, caregivers, relatives, and friends, provides a source of information, support, and even validation that people living with Gaucher disease may not find elsewhere.”

In the last decade, social media and organizations like NGF have been a tremendous help in building the Gaucher disease community worldwide. Certain online forums, like the private Facebook and Yahoo! groups allow those living with Gaucher disease to easily connect with others. This is especially helpful for those newly diagnosed with Gaucher disease. A person connects to the community online, makes a comment in a forum, and almost instantly receives multiple responses from people sharing their experiences and validating their concerns and feelings.

A strong knowledge base is also critical for promoting resiliency. Many doctors and other experts on the leading edge of Gaucher disease research are actively involved in the Gaucher community. They share their knowledge and increase understanding of the disease for everyone whose lives are touched by Gaucher disease.

“We have great teachers in our community. When people know what’s happening, they are more optimistic and their fear level drops. In the Gaucher disease community, the brain fitness component is particularly important — people actively educate themselves with NGF’s blog posts, online articles, and other resources to get a better understanding of this illness and what it means for their lives,” says Masters.

NGF Resources

To help develop a sense of resiliency and community among people living with Gaucher disease, the National Gaucher Foundation has compiled a list of useful resources for patients and families, including social networking groups and professional organizations. These resources put you in touch with experts and other people living with Gaucher disease who will share their experiences and offer support.

It may be difficult to be resilient in the face of an illness like Gaucher disease. But connecting to the Gaucher disease community provides knowledge, encouragement, and friendship, making the disease a little easier to bear. “My daughter has a saying from (the show) Project Runway…’you can cry, but you have to cut (fabric) and cry at the same time’. That’s what resiliency is. It’s being able to go on even though life is hard. You have to do what you have to do and continue on, no matter what. That’s the bottom line,” says Masters.

Sources

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