This article is written by Our Heart Speaks.
The difficulties one combats in coming to grips with the realities from living with chronic illness or disability vary by the condition as well as the individual. There is no dispute there is no one size fits all remedy when it comes to the physical aspects of disability or chronic illness. The same applies to what is required to live your best possible life with disability or illness.
One immense challenge that all individuals finding themselves dealing newly with chronic illness or disability is the emotional and spiritual component. How do I mentally wrap my arms around my new reality? How can I effectively grieve the loss of the life I once had and come to as much peace as possible about my new life and my new future?
Collectively, there is a lack of appreciation and focus as to how we can best support the healing process with all of its dimensions when faced with the physical and emotional challenges of a traumatic event or loss in someone’s life. As a society we all have a role in this process which often goes unrecognized. This fact may seem dismaying, but it is also an opportunity for change and to shift the paradigm.
Increasing understanding of what one deals with at an emotional level, and how they can optimize this experience, is the ambition that disrupts that. While individuals living with chronic illness and disability can’t immediately change collective thinking, and therefore others’ views regarding healing, they can take immediate, beneficial steps to address their own emotional healing.
Finding Emotional Wellbeing Through Meaning
Dr. Victor Frankl is renowned for his book Man’s Search for Meaning with its moral of one’s ability to find purpose and reason in the face of great adversity. What that is, and how it is achieved, varies significantly by individual. Each person’s journey to a sense of self is intimate and unique, but also transformational and inspirational.
In a 2010 study, researchers from the University of Michigan and Jeonbuk University surveyed 731 adults in the United States about their presence and search for meaning. In line with past research, they found the presence of meaning was positively associated with life satisfaction, happiness, and positive affect. It was negatively related with depression and negative affect. The search for meaning had opposite correlations but was still positively associated with it. Wellbeing—greater life satisfaction, more happiness, and less depression—among those who already had substantial meaning in their life.
It acknowledges the finding that meaning and purpose does not come without discomfort but achieving so delivers a deeply rewarding and fulfilling feeling. It is an ongoing quest, but one that is deeply satisfying.
The Power of Expression: How Sharing Your Story Helps
Related to what was discussed above about finding meaning and purpose, sharing what one has gone through emotionally because of a new illness or disability can be very therapeutic for that individual. It can provide meaning and purpose, simply through the fact that sharing thoughts and feelings about what one is going through or has gone through can:
- Make other patients feel less uncertain and less frightened
- Provide tips and tools that support coping, resilience and healing with other patients.
It can also provide meaning and purpose by motivating the story teller or artist to embrace a new or former artistic passion. For example, if a patient expresses all they went through or are going through emotionally via a poem or photo, it may lead them to revisit an old favorite art form or take up a new one.
Thomas Egnew, EdD of the University of Washington, is one medical professional who points to narrative expression as a way of assisting both practitioners and their patients. He observed that meaning is a potent and rich aspect to one’s life. It can be discovered in many ways, but for those combatting new challenges, it is hard to accept a severing of previous beliefs. In addition, their doctors were not prepared to help them overcome this.
Narrative expression, particularly in collaboration with a healing professional, allows both parties to explore and nurture the areas of identity that are wounded. It requires the ability to listen and perceive, but in letting patients express themselves, clinicians have the opportunity to grapple with the situation at hand in a holistically helpful way.
“Telling the story of suffering helps patients to reconstruct their painful past and gain distance on their suffering, receive affirmation of their search for a new identity, and find a language of interpretation that helps them transcend their suffering,” finds Egnew. It is another tool in the toolbox for both parties when a biomedical approach is too narrow.
For those who have overcome suffering through discovering meaning, and those who are still searching, sharing healing journeys via poem, a painting, a video, a song, an essay, or some other artistic medium is advised. It can provide further catharsis while serving as a resource to those currently in the discovery process of how to approach and live a full life with their new disability or chronic illness.
Dr. Keith Rafal, President and Founder of Our Heart Speaks, is the Medical Director of the Rehabilitation Hospital of Rhode Island in the United States. His long tenure in medical rehabilitation gave him a strong belief in the principle of healing through the strengthening of the mind, body, and spirit.
“How can we support this idea that fully appreciates our humanity?”, he pondered. “This way of seeing the world is transformative for those living through the challenge of new disability and for all of us. It is a real paradigm shift. How we develop these resources can help illuminate a path and serve as an inspiration to many. It’s really with that purpose in mind that we hope to make a difference.”
Under his leadership, Our Heart Speaks launched an international patient stories project as a means to provide a therapeutic experience and to raise awareness and engage with a broad audience of patients/disability community, caregivers, healthcare providers, and thought leaders to reimagine what is possible. This broad group of stakeholders provide each in their own way a critical community who can nurture and support those of us in the throes of a new disability/chronic illness. For health care providers and thought leaders, this may be in the development of best practices and approaches, new policies, or most fundamentally in the power of the story to reframe our perspective around disability and chronic illness as would be certainly true for patients and their caregivers as well. For some, a very real loss has proven an opportunity in some respects to experience life in a positive new and different way. Take Chris Downey, a member of OHS’ advisory board and a successful architect, who became legally blind in his mid-forties. Although he lost his sight, his remaining senses became more acute and offered him an enriching new world and the fortuity of a unique contribution to the field of architecture that was not “visible” before.
The journey of self-exploration is indeed deeply valuable for a patient, but the interpretation it is subject to by others adds is helpful as well. Sharing one’s story not only allows one to be heard, but to be evaluated as well. Rita Charon, MD, Ph.D. of Division of General Medicine, College of Physicians and Surgeons of Columbia University refers to it as “diagnostic listening” in her research.
Sharing a story leads to understanding the patient’s internal circumstances – allowing both clinicians and loved ones to convey empathy then and establish therapeutic practices.
Different Outlets of Expression
When it comes to healing through expression, what suits the patient is best. There are, however, some forms that are more common and shown to have beneficial results.
1. Music Engagement
Music been found to be one of the most prevalent and most researched forms of healing through expression. Music therapy has been shown to decrease anxiety, restore emotional balance, and reduce pain through auditory stimulation as well.
2. Visual Arts
The visual arts often serve as a substitute when spoken, or written words struggle to suffice. Drawing, painting, and other forms all provide refuge from the intense emotions surrounding illness. Studies have shown that those who participate in an art intervention have seen improved clinical results.
3. Movement-Based Creative Expression
Understood that it may not be practical for all, there is still evidence for the positive effects on the mind and body that movement can provide. Stress and anxiety can be relieved, and improvements of physical symptoms, cognitive and psychological assessments, and self-awareness are all found as well. Dance and theatre participation, as well as Tai-Chi or other Creative Movements, have become popular means. Adaptation can allow even those with restrictions in their ability to move to participate with this wonderful art form.
4. Expressive Writing
“Studies have shown that, relative to control group participants, individuals who have written about their own traumatic experiences exhibit statistically significant improvements in various measures of physical health, reductions in visits to physicians, and better immune system functioning,” find Heather L. Stuckey, DEd, and Jeremy Nobel, MD, MPH in their analysis of artistic expression. It has been shown to reduce stress, anxiety, pain, and fatigue while enhancing wellbeing. Essay writing, poetry, and journaling are common recourses with demonstrated value.
Living a life of meaning and purpose in the face of chronic illness or disability is the goal of all participants. Using different ways of expression is a method in the healing process that has a profound impact on holistic healing, rather than a narrow approach. That is why Our Heart Speaks was founded in 2015. To provide an outlet for people coping with a new disability or chronic illness to express themselves through a variety of artistic media, and share it with others who might benefit. Through their heartfelt inspirational stories, we are offered an honest personal perspective of a “new normal.”
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