Hypermobility Syndrome, AKA Joint Hypermobility Syndrome (JHS), Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT), Hypermobility Spectrum Disorders (HSD)

December 20, 2015

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.

If a tree falls in a forest... 

I suffer from a disease (H-EDS) which has myriad manifestations and yet has one common denominator in most patients - they have been treated dismissively by doctors. While I do no suffer from a particularly serious form of this disease (many other people have it much more worse), my condition became very bad due to the very late diagnosis and due to other concurrent aggravating factors in my life.

I have not had the opportunity to live in a country where the doctors are aware about this disease and where the management and support system has become much more EDS-friendly. Unable to get support or even a listening ear from my doctors was a huge challenge and damaging factor in my life. I got a diagnosis from the rheumatologist with only a few words of advice, "Take painkillers once in a while, continue any physiotherapy you are doing, don't do the same activity for a prolonged period, and the worst is behind you as your joints will get stiffer with age and you won't be in pain anymore. I wont be seeing you again, you will continue to show your GP now on."***

Self-Narration and Self-Healing

I began to research on the net about this condition and felt wronged by the medical system. A phase of depression and bitterness followed as I tried to grapple with the implications of my diagnosis (an incurable disease, hereditary, lifelong disability, no visible end to the excruciating pain, etc.).

I found many resources and books that have helped me immensely and I write about them on this blog. However, the one book that facilitated the healing by sowing the seed of self-help was the book by Dr. Rita Charon, "Narrative medicine: honoring the stories of illness". Although this book is aimed at medical professionals, I think it would benefit anyone to read this book of immense compassion and the quest for healing. There is not a single human who does not face the universality of suffering, illness and death.

This book allowed the patient in me to start freely tell her story of pain, loneliness and fear to the healer in me who learned to listen patiently and compassionately. I was finally not a time wasting patient anymore - I was a story, sad but not without any hope, and I was also a listener and healer. I wrote my pain, spoke my pain in my mind and cried. I read what I had written and listened to what I had to say and cried as well. I recognized triggers, aggravating factors, possible doable lines of management, unspoken fears in the narration. I gave myself the kindness I felt I deserved and I forgave myself for all the failings I held against myself. And then suddenly I found myself able to forgive others too for the failings I held against them. As the burden of the bitterness and guilt (I was not wrong/needy/hypochondriac for wanting to speak, the doctors were wrong for not wanting to listen) lifted from me, I was not longer pinned underneath it. I could crawl out (and crawling it was) and I could now help myself. The hurting patient in me could finally accept the wisdom inside herself and the knowledge that was inside the healer me. And the healer in me could finally respect, empathize with and learn from the narrator patient in me instead of feel only sympathy or exasperation. The patient in me grew stronger for the freedom of narration and the healer in me grew humbler and they both healed together.

***The problems in this advice were:

She should have told me that I was in a state of extreme deconditioning and needed to strengthen my muscles as that is the only component of the musculoskeletal structure that we can strengthen. I was already getting private physiotherapy for my pelvic instability, which was extremely expensive. She did not prescribe a physiotherapy that would lead to a subsidized or free therapy. I could not afford the physiotherapy for more than 6 sessions as I did not have any more money for it. She should have also told me that I needed body awareness training (as I have poor proprioception) for my gait and posture problems. She did not offer me any advice on aids and braces for my ankles, wrists and fingers. The GP she was referring me back to was the GP who has no clue about this disease and who refused to examine me because I gave her a detailed account of my pains and wasted 12 minutes of my alloted 15 minutes. The hope and consolation she offered that my joints will get stiffer with age is not very accurate. Maybe I will not be hypermobile in those joints after 10-15 years. But the damage and injury that exist in those joints are not going to heal magically. The basic problem is that the defective collagen that affects everything - my skin, my eyes, my spine, my internal organ systems, my autonomic system dysfunction, and of course the ligaments, muscles, fascia, tendons, etc. So, just a few joints getting stiffer does not take away all that is wrong with the body as a whole, in so many places.