top of page
  • Writer's pictureThe Rare360 Editorial Team

From Isolation to Empowerment: How Performing Arts Can Transform the Lives of Those with Rare Diseases

A young girl sits with a downcast expression, holding her hand. She appears sad or troubled. In the foreground, another hand is extended, offering help or support.

Mental health challenges impact individuals of all age groups, including children and teenagers. During the coronavirus pandemic, the Centers for Disease Control and Prevention (CDC) reported that more than one-third of high school students experienced poor mental health. Shockingly, data from Johns Hopkins University reveals an even higher percentage, with over 50% of teens reporting pandemic-related mental health difficulties.


Researchers noted that patients with rare disorders had higher rates of mental health conditions during the COVID-19 pandemic. Social isolation, unpredictability, and lack of accessibility to non-urgent treatment providers contributed to this impact.


For individuals grappling with rare conditions, each day presents its own set of hurdles. It's imperative to examine the correlation between rare diseases and mental health more closely. Enhancing mental well-being can prove pivotal for many rare disease patients as they navigate their unique daily challenges.


Mental Health and Rare Disease

The coronavirus pandemic has changed how our society talks about mental health. Just a few years ago, the subject used to be somewhat taboo. Prior to the pandemic, those who admitted to suffering from mental health challenges had to deal with stigmatization and other consequences. Now that more people have opened up about their personal mental health struggles, stigmas are breaking down, and mental health challenges are becoming a topic of daily conversation.


Rare diseases have not yet become the subject of everyday discourse; however, one in 20 people worldwide suffer from a rare disease. In the United States, a disease is considered to be rare if less than 200,000 people are affected by it. There are currently more than 8,000 rare diseases identified. Approximately 69% of rare disease patients report experiencing depression, and 82% experience anxiety and stress. In comparison, the combined rate of depression and anxiety in the general population is approximately 17%.


According to a comprehensive study comparing rare disease diagnostics, care, and treatment in the United States over three decades, rare disease patients reported higher levels of fatigue and pain compared to the general population. The study also found that participants with rare diseases experienced greater anxiety than 75% of Americans and greater depression than 70% of Americans. Rare disease patients had lower social engagement than 80% of Americans.


The Rare Advocacy Movement (RAM) is working to shine a light on the people living with rare diseases and their challenges. Maintaining or regaining excellent mental health can be challenging for people living with a rare disease. They are also more prone to experiencing feelings of isolation or abandonment, both when navigating the health care system and attempting to integrate into normal daily life.


Why Children and Young People Are Especially Affected?

Rare diseases encompass a wide range of conditions, from genetic disorders to metabolic diseases, and each has its own impact on physical and emotional well-being. Children with rare diseases often face unique challenges, and their mental health can be significantly impacted. Nearly one in three rare disease patients are children. However, approximately 70% of rare diseases exclusively develop during childhood. That means, even though 70% of people living with a rare disease are 18 years of age or older, most have been living with their rare condition since childhood.


For some, living with a rare disease equates to frequent hospital trips and stays, countless tests, and a long diagnostic journey. Throughout this time, few of the young patients and their parents have access to a fully developed and informed support system. Several rarely know others in the same situation because the diseases are less well-known and prevalent, making it difficult to create meaningful connections with other people. Isolation is a frequent consequence


Mental Health Challenges in Children with Rare Diseases:

Psychological Difficulties

At least 25% of children with rare diseases experience psychological difficulties. These challenges include:

  • Anxiety: Children may feel anxious due to the uncertainty surrounding their condition, frequent medical appointments, and potential limitations.

  • Mood Disorders: Depression and mood swings can occur, especially when dealing with chronic symptoms or disability.

  • Behavioral Issues: Coping with a rare disease can lead to behavioral events related to frustration, stress, and social isolation.

  • Emotion Regulation: Some children struggle with managing their emotions effectively.

 

Factors Contributing to Mental Health Impact:

  • Delayed Diagnosis: The journey to diagnosis for rare diseases can be lengthy and emotionally draining. The uncertainty during this process affects both the child living with the rare condition and their families.

  • Consulting Multiple Specialists: Rare diseases often require consultations with various specialists, leading to additional stress and anxiety.

  • Uncertainty About Health and Future: Children with rare diseases face ongoing uncertainty about their health, prognosis, and quality of life.


Children with rare diseases are indeed more susceptible to mental health challenges. Advocacy, early intervention, and holistic support are crucial to addressing these issues and promoting well-being in this vulnerable population. 


How Performing Arts Can Help?

Four young girls are joyfully performing ballet, displaying graceful movements with happy expressions. In the background, on the wall, there are additional images depicting scenes from the dance.

Performing arts can be incredibly beneficial for mental health, particularly for individuals living with a rare disease, in several ways:

 

  • Creative Expression: Engaging in performing arts such as music, dance, or theater provides a creative outlet for individuals to express their emotions, experiences, and struggles. This expression can be cathartic, allowing patients to process their feelings and experiences in a healthy way.

  • Sense of Community: Participating in performing arts activities often involves connecting with others who share similar interests and experiences. This sense of community can be especially valuable for rare disease patients, who may feel isolated or misunderstood due to the rarity of their condition. Being part of a supportive community can reduce feelings of loneliness and provide a sense of belonging.

  • Distraction and Relaxation: Immersing oneself in a performance, whether as a performer or audience member, can serve as a temporary distraction from the challenges of living with a rare disease. It allows individuals to focus their attention on something enjoyable and engaging, providing relief from stress and anxiety. Additionally, participating in performing arts activities can promote relaxation and reduce tension in both the mind and body.

  • Empowerment and Self-Confidence: Learning and mastering new skills in the performing arts can boost self-esteem and confidence. For rare disease patients who may face limitations or obstacles in other areas of their lives, achieving success in a creative pursuit can be empowering. It reinforces a sense of competence and capability, reminding individuals of their strengths and abilities.

  • Emotional Regulation: Engaging in performing arts activities often involves practicing mindfulness, emotional awareness, and self-expression, which are valuable skills for managing mental health. Through music, movement, or acting, individuals can learn to identify and regulate their emotions more effectively, enhancing their overall emotional well-being.

  • Sense of Purpose: Participating in performing arts activities can provide rare disease patients with a sense of purpose and fulfillment. Whether it's performing on stage, creating art, or collaborating with others on a project, these activities give individuals a meaningful way to contribute their talents and creativity to the world.


Overall, the performing arts offer rare disease patients a holistic approach to mental health and well-being, addressing emotional, social, and psychological needs while fostering self-expression, connection, and personal growth.


Performing Arts and Mental Health in Rare Diseases

Let’s explore some real-life examples of how performing arts and mental health initiatives have intersected, especially in the context of rare diseases:

  • Netflix’s “Global Accessibility Awareness Month”: Netflix, the popular streaming platform, has been actively promoting accessibility awareness. During the month of May, which is recognized as “Global Accessibility Awareness Month” (GAAM), Netflix highlights content that is accessible to a wide range of audiences, including those with disabilities. They provide features such as closed captions, audio descriptions, and customizable subtitles. By making their content more inclusive, Netflix contributes to the mental well-being of viewers who may have rare diseases or disabilities. Feeling included and represented positively impacts mental health.

  • Theater and Rare Disease Awareness:

    • “The Curious Incident of the Dog in the Night-Time”: This play, based on the novel by Mark Haddon, centers around a young boy with autism who investigates a mystery. The production uses innovative staging techniques to immerse the audience in the protagonist’s perspective. It raises awareness about autism and encourages empathy.

    • “Next to Normal”: A powerful musical that explores mental illness within a family context. It addresses topics like bipolar disorder, grief, and loss. The emotional impact of the show helps break down stigma and fosters understanding.

    • “Dear Evan Hansen”: Another musical that tackles mental health themes, including anxiety, depression, and loneliness. The character of Evan Hansen struggles with social anxiety and finds solace in writing letters. The show emphasizes the importance of connection and empathy.

  • Art Therapy Programs: Many hospitals and clinics offer art therapy programs for patients with rare diseases. These programs allow patients to express themselves through various art forms, such as painting, sculpture, or music. Art therapy can reduce anxiety, improve mood, and provide a sense of accomplishment. Example: A pediatric oncology unit might have art therapists working with children undergoing cancer treatment. The creative process helps children cope with stress, pain, and fear.

  • Community Dance and Movement Classes: Dance and movement can be therapeutic for individuals with rare diseases. Community dance classes, whether in-person or virtual, provide an opportunity for self-expression, physical activity, and social interaction. Example: A local dance studio offering adaptive dance classes for children with muscular dystrophy. These classes focus on movement, coordination, and building confidence.

  • Music and Rare Disease Advocacy: Musicians often use their platforms to raise awareness about rare diseases. Benefit concerts, charity albums, and awareness campaigns help fund research and support patients. Example: The band Coldplay collaborated with the Global Citizen organization to raise funds for polio eradication. While polio isn’t a rare disease, the impact of music in advocacy is evident.

While these examples highlight the intersection of performing arts and mental health, numerous other initiatives and forms of creative expression also play a role in promoting well-being. Whether it involves attending a theatrical performance, engaging in an art workshop, or simply enjoying music, the arts offer diverse avenues for enhancing mental health among individuals living with rare diseases.


Making a Long-Term Impact

Several rare diseases are progressive, putting patients in a position where they constantly have to readjust to new life circumstances. While adjusting to changing needs is challenging for anyone, it presents an even greater hurdle for individuals with complex health requirements. The process of accommodating physical and cognitive limitations, compounded by growing challenges, often takes a toll on mental well-being.


Backed by the Rare Advocacy Movement (RAM), a global network deeply entrenched in the rare disease community, collaborations like Mental Health for Rare serve as vital conduits for change. By disseminating the benefits of holistic mental health solutions such as performing arts and amplifying the voices of those affected by rare diseases, RAM and its allies endeavour to raise awareness, advocate for research, and promote mental health support on a global scale.


References

  1. https://www.cdc.gov/mmwr/volumes/71/su/su7103a3.htm

  2. https://publichealth.jhu.edu/2021/teen-mental-health-during-covid-19

  3. https://www.rareadvocacymovement.com/

  4. https://rarediseases.org/wp-content/uploads/2019/01/RDD-FAQ-2019.pdf

  5. https://elsevier.health/en-US/rare-diseases/understanding-the-mental-health-impact-of-a-rare-disease-diagnosis

  6. https://ojrd.biomedcentral.com/articles/10.1186/s13023-017-0591-7

  7. https://rarediseases.org/nord-releases-report-on-the-state-of-rare-disease-diagnosis-care-and-treatment-in-america-over-three-decades/

  8. https://www.chp.edu/our-services/rare-disease-therapy/conditions-we-treat

  9. https://www.tgen.org/patients/center-for-rare-childhood-disorders/stories/the-role-of-therapy-addressing-mental-and-emotional-needs-of-children-with-rare-diseases/

  10. https://globalgenes.org/story/beyond-the-diagnosis-the-critical-need-for-mental-health-support-in-the-rare-community/

  11. https://mcpress.mayoclinic.org/living-well/the-intersection-of-art-and-health-how-art-can-help-promote-well-being/

  12. https://www.rareadvocacymovement.com/post/helping-people-diagnosed-with-a-rare-disease-overcome-mental-health-challenges

  13. https://www.psychologytoday.com/us/blog/the-art-effect/202401/the-role-of-community-arts-in-trauma-recovery


Comments


bottom of page