Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
Kindness – Naomi Shihab
The young woman who sat down next to me chatted away cheerfully with her nurses. The majority of people around me were usually being treated for various cancers and tended to be quiet and subdued. After her infusion was up and running, I noticed that she was also having IV immunoglobulins. It didn’t take long before we worked out that we both had myositis…possibly the only two patients with our rare disease in the whole town.
Every four weeks for the last eighteen months, I had spent six hours in Cancer Care receiving an infusion of immunoglobulins whose magical effects enabled me to walk. But this week I was having an extra infusion, two weeks later and on a different day…Thursday instead of my usual Tuesday.
Four months before my myositis had relapsed after decreasing my immunosuppressant medication. I was hoping this extra boost of immunoglobulins would nudge my disease once more into remission. I had no thought that it would also give me the encouragement that so often makes such a dramatic difference in my ability to cope with such a devastating and disabling disease.
I had already heard of E…not by name, but by story. My rheumatologist had told me he had had one previous patient with myositis. She was much younger than me and had been in the hospital for five months, unable to walk. At my follow-up appointment after my muscle biopsy, my rheumatologist had been visibly relieved that I could still walk…though I have no idea how as I was unable to get out of bed, or even brush my hair. He admitted to feeling toey about me and worried that he should have commenced me on medications sooner. He knew better than I did how disabling this disease could get, and how long medications could take to work.
Our stories were different, yet the same. The same bewilderment that we could go from being so well to so incredibly unwell seemingly overnight. It seemed impossible. This was then followed by denial. Surely we would soon be well. How could we not be? We had plans! Then, after months of minimal improvement, fear set in.
As we shared our experiences, I realised that my feelings had been normal. We talked non-stop for hours, and at the end shared our phone numbers so we could keep in touch. My family and friends have given me fantastic support in my illness. They have never criticised or judged. But to talk to someone who has walked in the same shoes as me was amazing.
After E left, the nurses said they had never seen two patients become friends so quickly! But to talk to someone who understands was so liberating. After 18 months of confused looks from a multitude of specialists and friends, struggling to understand me, it was a breath of fresh air to verbalise feelings that were so readily understood and shared.
It once again showed that the most important thing when dealing with illness and trauma is sharing our stories. There was a recent article published in JAMA which compared antidepressants with writing about the traumatic experience in the treatment of PTSD. “Written exposure therapy (WET) is a relatively new brief trauma-focused therapy where patients are directed to write about their traumatic experience in session.”
They had very similar long-term outcomes, both showing improvement. The article concluded that patients probably needed more focused supportive psychological treatment than just medication or WET, but failed to note the benefits of writing on the patients’ mental health.
I have coped throughout my whole illness by writing my story. But even better than writing is sharing stories with someone else and encouraging each other. Being able to talk to E was more beneficial than talking to a psychiatrist. A psychiatrist could tell me that me feelings and experiences were valid, but by hearing E tell her story I realised that instead of being a frustrating and confusing patient, I was actually a completely normal myositis patient.
The main task of the patient is to tell their story. The role of the doctor is to listen to their patients’ stories. If the patient is a poor storyteller, as many are, doctors often need to ask questions to obtain the information necessary to make a diagnosis. Sometimes, though, it is the doctor who is the bad listener, and trying to fight to be heard often results in being seen as melodramatic or unstable.
Taking a good history is one of the fundamental skills of medicine. As a first-year medical student, I was sent out to talk to patients about their disease and take their history. At this point in my medical education, the patient knew everything, and I knew nothing. Most patients enthusiastically educated me about their disease. Some had common ailments while others had rare ones that I would never see again, but all had something to teach me. Each patient was different, both in their disease and the effect it had on their lives. The underlying skill was learning to listen and empathise. Later, we would add the skills of physical examination, diagnostic tests, and appropriate treatment to our skill sets, but in medicine, the story is everything!
This month I listened to a Podcast where a rheumatologist and one of his patients discussed her illness. One of his major points was how every immune system is different, so every patient is different. While there will be similarities, no two patients will be the same. He then said that only the patient actually knows their illness. His job is to encourage the patient to talk as much as possible, and then advise, support and write scripts for medications. The patient is actually the expert and he is there to consult and give options. Once again, I saw my frustration at no one really understanding me as valid. There may be few patients like me, but that doesn’t mean my symptoms don’t exist…just that they are unique.
It may sound trite to say that kindness is everything. Kindness encompasses listening and empathy, validating fears, offering encouragement for the future, and simply being there to walk side by side through the ups and downs of an ever-fluctuating illness. We can be encouraged by friends and family, by our doctors and by sharing stories with others who have the same struggles. It is by connecting with others that we heal physically and emotionally. Meeting E seemed like a miracle, a glimmer of hope while fighting through a tunnel of darkness.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore.
Kindness – Naomi Shihab
Recommended Reading: The Healing Power of Storytelling – Annie Brewster
Beauty for Ashes 