The Role of Narrative in Healing (Part-2)

Why is the subtitle of this blog "information and narrative"?

Because the power of "Narration" saved my life and helped me heal.

Stories: it takes two, the narrator and the listener

I have been a story lover all my life, as far back as my memory goes. I loved to hear stories, read stories and know stories. I self-taught myself to overcome many challenges I faced as a result of social anxiety by treating people as narrators of their stories. I became a patient and valued listener among friends by letting myself be the "listener" to their stories. And I completely agree when the advocates of narrative medicine say that you need to have humility to gain this competence - simply because being told the story of someone's life or fears or pain is an extremely humbling experience. You also need to be attentive, and get immersed in the experience - because it is not just their words. The story has many components - their words - said and unsaid; their body language; the background and context; and the significance of it all in their life.

Protect your arms and hands

Joint hypermobility syndrome (JHS) affect the connective tissues (the stuff that holds us together and binds one thing to another in the body) of the body and leads to multi-site painful conditions.

In particular, JHS causes laxity of ligaments (the connective tissue that joins bones to bones in a joint) in a large number of joints. The overlax ligaments result in overextension (movement beyond the normal range) at those joints leading to chronic injury, pain and disability.

Apart from overextension, JHS also makes you prone to get repetitive stress injury more easily. While the serious joint and soft tissue problems that can occur in the various joints of the arms (shoulders, elbows, wrists and fingers) have some scary names like epicondylitis, frozen shoulder, carpal tunnel syndromes, bursitis/tendonitis, synovial cysts, etc., it is also true that even without these conditions, you still have to deal with perpetual pain.

I wrote about the activities and aggravating factors for pain in upper limb joints in this post. I will discuss here, what can you do to ease mild pain and protect yourself.

Video Link: Struggling to be me with chronic pain

A 10 minute video on living with chronic pain. The script is drawn from peoples' own words about what it is like to live with chronic pain and is performed by an actor. The source material is from 77 qualitative studies exploring the experience of over a thousand adults with chronic musculoskeletal pain. The project was funded by the National Institute for Health Research Health Services and Delivery Research (NIHR HS&DR) Programme (UK).

The Role of Narrative in Healing (Part -1)

Honoring the stories of illness | Dr. Rita Charon* | TEDxAtlanta

What is Narrative Medicine?

The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received.
Health care and the illness experience are marked by uneasy and costly divides: between those in need who can access care and those who cannot, between health care professionals and patients, and between and among health care professionals themselves. Narrative medicine is an interdisciplinary field that challenges those divisions and seeks to bridge those divides. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received. [1]

How much pain?

Pain is highly subjective and a complex sensation and phenomenon. There are many scales and questionnaires that attempt to objectively quantify pain. A well-known pain scale is the McGill Pain Index.

If you see this chart, you will see that the pain of complex regional pain syndrome (CRPS) is the worst sort of pain one can undergo. Some people with JHS/H-EDS may have fibromyalgia pain, CRPS, and other complex neuropathic pain that reach right to the top of the scale. 

Whether or not the pain appears proportionate to the inciting cause, what ultimately matters to the well being of the person is their perception of the pain they are feeling. The pain may be highly disproportionate in CRPS, neuropathic pain, and many such conditions. An excellent document on the pain (types, mechanisms and management options) in EDS is here

Apart from the pain one perceives, it matters how they are able to deal with it and function in spite of it. This may be influenced by the presence of other/multiple illnesses, depression, social and emotional support, personal attitudes and background, and presence of other factors like fatigue, etc. A scale that measures the functioning of a person affected by pain, used by the American Chronic Pain Association is this. 

If you have been living with chronic pain for a number of years, you will have your own pain scale and pain milestone record, even if mental. I remember many events of the world and my life and the year it was, in the context of the pain level or health event around that time. And since I am asked how are you frequently by friends and family, I often wonder if I should share a somewhat standardized scale with them that would be more truthful than "I am well" and "I have a bit of pain, but I will be fine soon". 

In my own pain scale, the worst pain I have faced in my life recently was related to my lower back and pelvic area - which was at its peak (10/10) for a period of two years after childbirth. But I had faced equally bad pain twice more in life. Once during the period when I had to continue travelling for a week (and even carry baggage) when two of my intervertebral discs had prolapsed the first day in the train (period of 10/10 pain was 10 days). Second was the period when there was an intense flare up involving prolapsed discs, pinched nerves, displaced vertebra, severe neuropathic pain and spasms in my lower limbs, torn muscle in upper back - all at the same time (period of 10/10 pain was 3-4 months). 

Another scale frequently posted by people with EDS, fibromyalgia and chronic illnesses is this, which I think is simple, humorous and quite accurate. 

A very comprehensive post on pain management (in the context of CRPS but applicable to pain in H-EDS as well) is here

Healing the bitter core

In my previous post, Losing my cores, I wrote about the devastating effects of my chronic pain and disabling condition, particularly on my core psychological state. I believe that the assaults on my psyche have been in phases and in forms of waves. As the problems waxed and waned, so did my bitterness. A complete physical or psychological recovery never happened for years.

I came to know that I have a genetic disorder when I was 38 years old and that I was never going to recover completely. To top it all, my child might actually get the condition from me. When I realized this bit, I felt that I was going to drown in the wave of bitterness and sadness. But I did not. And right now, my psychological core is the healthiest it has been in a decade.

There are many factors that I believe have contributed to healing my psychological core, and I think while some of these factors are generally applicable to most people, some other factors are personal and unique, depending on the person's unique personality, background and the attributes of the losses they have faced.

These are the things I believe helped me heal my bitter core.