What Does Healing Mean When You Have An Incurable Illness?

By Katie Zulak

I remember sitting in the doctor's office when he said "I think you have a condition called Fibromyalgia." He looked down for second and then back up at me, "I know this is hard to hear when you are only 25, but we don't have a cure for your syndrome, only strategies to help manage it." It's hard to get your head around the idea that there will be no curing of your illness.

So, surely we can't talk about healing an incurable syndrome? To answer that, we need to distinguish between curing and healing.

The Cambridge English dictionary defines curing as "to make someone with an illness healthy again" and "to solve a problem." The word comes from Latin and originally meant "care, concern, trouble" and came to mean treating someone medically in order to eliminate disease.

The Cambridge English dictionary defines healing as both "the process of becoming well again, especially after a cut or other injury," and "the process in which a bad situation or painful emotion ends or improves." The original root of the word is Germanic and meant "to restore to wholeness."

Eliminating disease versus restoring to whole health are very different goals when you apply them to fibromyalgia. It's true that we don't have treatments that can completely eliminate the presence of fibromyalgia in the body, and so curing the condition isn't possible. But if we instead talk about improving well-being or restoring a sense of wholeness then, yes, I believe that healing is possible.

Let's go back to definitions for a moment. Today, health is defined as "the condition of the body or mind and the degree to which it is free from illness" in the Cambridge English dictionary. Not surprisingly, Heal and health are related words. In old English, health meant "wholeness, being whole, sound or well."

So, in the past, health meant more than just the absence of injury or illness. Being healthy was a sense of completeness, in mind, body and soul. Healing was the process of restoring that sense of wholeness and well-being if it had been disrupted by disease or injury. So, If we look at healing and health in those terms, then I think it is possible to heal if you have fibromyalgia.

The practice of medicine has gotten away from healing as its primary purpose. "Physicians, trained as biomedical scientists, have focused on the diagnosis, treatment, and prevention of disease. In the process, cure, not care, became the primary purpose of medicine, and the physician’s role became “curer of disease” rather than “healer of the sick” (Egnew).

Cutting edge science keeps showing us that pain is both an emotional and physical experience, which reinforces the ancient holistic sense of health. Pain psychologist Dr. Beth Darnell says that "the areas of our brain that are associated with sensory perception, they share real estate with the areas of our brain that are involved in the processing of emotions" (quoted in Healthline).

In other words, pain is processed in the brain by both centres that perceive bodily sensations and centres for experiencing emotions. Brain images show that as pain moves from acute to chronic, "the pattern of neurological synapses go from an acute pain centre to more the emotional centre connected with the limbic system" explains Dr. Hanscom (quoted in Healthline).

Emotions can affect the experience of pain. Laughter, falling in love, feeling gratitude, cultivating calmness and many other positive emotions can reduce pain intensity and increase pain tolerance. Sadness, anger, guilt and depression can make pain more severe and lower pain tolerance (Practical Pain Management).

 In fact, the International Association for the Study of Pain now define pain as an "unpleasant sensory and emotional experience" (Healthline). So, focusing on mental, emotional and spiritual healing, as well as physical healing, is a chronic pain treatment validated by ancient understandings of health and healing, as well as modern medicine.

We can describe "wholeness of personhood as involving physical, emotional, intellectual, social, and spiritual aspects of human experience." Illness, by causing loss and isolation, can take away elements of self, especially your old self, that together make up the feeling of being complete as a person. Self-determination theory offers one way to understand our mental and emotional needs. It explains that all people have three basic psychological needs for emotional well-being (Very Well Mind):

·       autonomy: being the author of your own story, making your own choices

·       competence: having a sense of accomplishment, learning new skills

·       relatedness: feeling connection and attachment to other people

By finding new ways to meet these needs, we can start to heal from illness losses. Everyone will have their own definition of what a "sense of wholeness" means to them. Here are the aspects of a 'whole self' that matter most to me, and developing them has been part of my healing journey:

·       autonomy:

o   a new narrative: telling a new story about yourself, what you've learned is most important to you, how you've changed and who you are now

o   personal growth: being self-compassionate; developing inner character, and knowing yourself better, such as becoming more patient, stronger, practicing gratitude and being more present (and recognizing your self-growth)

o   enjoyment as a worthwhile reason for doing something; savouring simple pleasures: listening to music, playing with  a pet or child, sitting in the sun, holding hands

·       competence:

o   cultivating skills and seeking enriching experiences that lead to satisfaction and enjoyment such as making art, music, creative writing, crafting, styling fashion or beauty, gardening, singing, learning a language, taking a course, birdwatching

o   contributing beyond yourself and making meaning through personal effort: traditionally work or volunteering, but also providing support to others who might be struggling with illness through blogging and social media, fostering a pet

·       relatedness:

o   doing our best in our life roles as spouses/partners, parents, siblings, or children within our families, or being reliable friends; connecting more deeply through being present or talking

o   self advocating or setting boundaries within difficult relationships

o   reaching out within our communities, whether meeting online, providing support online, connecting with faith congregations, joining a meetup of likeminded individuals such as a book club or movie aficionado group, or going to a support group

How do you define 'wholeness' and how would restoring your sense of whole personhood be part of healing while living with fibromyalgia?

Katarina blogs at SkillfullyWell.com

References:

Egnew, Thomas (2005). 'The Meaning Of Healing', Annals of Family Medicine 3 (3) p. 255 – 262.

Doheny, Kathleen. 'The Interactions of Emotions and Chronic Pain', Practical Pain Management.

Radcliffe, Shawn. (2014). 'For Pain Patients the Physical and Emotional are Intertwined', Healthline. Retrieved from www.healthline.com

Very Well Mind. (2017). 'What is Self-Determination Theory?' Retrieved fromhttps://goo.gl/cQ8mzy