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Support Circles - for Multiple Sclerosis and Beyond

Me with Don - the most important link in my support circle (March 2018)

I don't like to keep secrets. And in the fall of 2009, I had a big one: a new diagnosis of multiple sclerosis. Who should I tell? I am close with my family, and I told them right away. But who else should know? 

 

"It's considered a disability," my mom said. "People may see you differently. Do you really want to tell everyone?"

 

I rarely disagree with my mom, but in this case, I opted for a widespread broadcast. I called my colleagues at the clinic where I worked as a family doctor. I emailed friends and cousins. "I have MS. I thought you should know."

 

I provided more details: the dizziness and visual changes that led to my MRI that led to my diagnosis, the concerns about future disability, the potential impact on my career, my husband, and our daughters (aged two and four at the time).

 

Was I bold? Was I foolish?

 

Neither. If anything, I was, perhaps, selfish. I was lessening my burden by sharing it and asking for help. I was relieving myself of the pain of carrying around a secret, of building more barriers to protect it when it didn't need to be protected. I couldn't have articulated it at the time, but most importantly, I was activating my support circle.

 

Like a magnetic force suddenly unleashed, my news brought well wishes and offers of help from all over:  home-delivered meals, cards of support, offers of playdates for my kids. I was overwhelmed with the generosity that bolstered my husband Don and me during those frightening days as we faced tremendous uncertainty.

 

I went from knowing no one with MS, to finding connections with half a dozen fellow MS patients who offered me - a stranger with nothing to give in return - encouragement, advice, and proof that my life wasn't over.

 

It was still a risk. Not everyone can share such news freely. People have lost jobs and friends when revealing illness. Even I have not been consistent over the years in sharing my MS diagnosis, especially with new bosses and colleagues. But over time, I usually have opened up to them as well. I have been lucky; I don't think anyone's reaction has ever disappointed me.

 

I was reminded of the importance of a support circle during my father-in-law's recent hospitalization for a sudden and unexpected illness. Twenty-four hours after hearing the news, Don was on the plane flying across the country. He had to go. It's just what you do when you are at the top of the unwritten list of support circle members for someone, as he was for his dad.

 

While Don – also a physician - was with his parents, he met his dad's doctors. He discussed treatment strategies and options for care upon hospital discharge. He also identified more people in his dad's support circle. Two aunts and an uncle would be there to help his parents when he had to return home. "We got this," they assured him.

 

Over my years of patient care, I have seen many people without a support circle. Or sometimes I have felt that I, alone, am the support circle. Some of them have suffered terrible losses, leaving them alone. Others have moved frequently, losing connections with each relocation. New immigrants may be especially vulnerable, uprooted from family, isolated by culture and language differences. I search for their strength - a bright personality, resilience, hidden talents and skills. Many have demonstrated great courage and fortitude. Over time, they will find their support circle, and I have been honored, at times, to help in that process.

 

In my next post, I will offer ideas on how to build and strengthen your support circle. For more lessons I've learned as a doctor turned patient with MS, see my article on CareDash: https://www.caredash.com/articles/8-lessons-learned-by-a-doctor-turned-patient. Thanks for reading!

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