How the quiet members of a care team provide invaluable support

1 Kings 19 tells the story of the prophet Elijah’s search to encounter God. Elijah looks for God in a great and powerful wind, an earthquake, and a fire, but has no success until he hears a “gentle whisper.” It turns out that God’s presence is quiet and soft.

The further I go in my journey with myasthenia gravis (MG), the more I see the importance of my support group. All who live with orphan diseases like MG rely on the family members, friends, doctors, and others who make up our care team, but I don’t think any two teams are exactly alike. I guess it’s appropriate for people with “snowflake diseases” — those that present differently in each patient — to have snowflake teams.

How do Elijah, orphan diseases, and snowflake teams connect and relate to MG? Let me explain.

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Every care team needs a Lauren

Recent family gatherings gave me opportunities to observe and appreciate the many personality types in our family. Some are defined by their outsized personalities. Like the bartender in Billy Joel’s “Piano Man,” they’re “quick with a joke, or to light up your smoke.” Others are quiet and deliberate in word and action. They bring to mind the words of priest and philosopher Romano Guardini: “The greatest things are accomplished in silence.”

It’s easy to overlook the quiet members of our support groups. They don’t seek the spotlight and find satisfaction in helping others without counting the cost. This year, I observed closely my sister-in-law, Lauren. (I’ve written about her mother, Jodie Caruso.) In difficult moments, when others briefly lose their moorings, Lauren remains levelheaded and calm. If someone speaks disparagingly of another, she reminds us of the good qualities that person possesses.

While every care team is unique, each one needs a Lauren.

News coverage focuses on big, sensational stories. Breakthrough drugs and billion-dollar stock offerings get clicks. As members of the rare disease community, we see and value the Laurens who perform the unglamorous, sometimes boring work that goes into much of scientific research and patient care. They are the gentle whisper that conveys power and comfort.

I’ve discovered three qualities Lauren shares with others like her. All of us should pause and consider these; they’ll make us better patients and caregivers.

First, they can put themselves in another’s place. This ability builds trust between patient and caregiver. When difficult decisions are necessary, we can count on their advice.

Second, they’re patient. Chronic illness isn’t linear; improvements can be followed by setbacks, and maneuvering through our health insurance system is a constant struggle. Just when things seem settled, the rug will be pulled out from under us. The calm, rational presence of the Laurens of the world reminds us to practice patience in difficult times.

Organizational skills are the third trait shared by this group. Life with MG involves frequent medical appointments and medications that need to be taken at appointed times. Each week I spend several hours organizing my meds, which can be frustrating when all the pills are round and white. Keep in mind that almost all of the responsibilities I had before MG still need attention. Accomplishing all of them takes planning and organization.

I know I’m lucky to have someone like Lauren in my life. Her example is with me even when we haven’t spoken for a while. I suspect that all of us living with MG have a Lauren who provides support quietly and without fanfare. I hope that, unlike Elijah, who looked for greatness in the loud and dramatic, we see unsurpassed value in the still, soft presence of the Laurens of our world.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.