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The Parallel Universe: What would life be like with MS and no insurance or help?

In my parallel universe - without resources, connections, insurance - I don't think I would have been able to climb so many mountains.

Sometimes I imagine myself in a parallel universe, as someone with MS who lacked resources and insurance at the onset of symptoms. What would my life look like? Would I be able to walk, to work, to drive? Would I be drowning in debt, choosing between paying rent or paying for my medication? Would I even have a diagnosis or be dismissed by doctors and labeled with "anxiety," "depression," "nonspecific dizziness," "nonspecific numbness," "neurologic symptoms of unknown etiology," "hypochondriasis?"

 

In my years as a physician in community clinic settings, I saw hundreds of uninsured patients with challenging health conditions. Together we struggled to navigate the complex web of services available, but we often came up short.

 

When I developed symptoms of MS almost nine years ago, I had vague, nonspecific complaints. Dizziness was the most notable one, but I couldn't describe it well. I was fortunate to see a neurologist and then an ear, nose, throat doctor – both personal friends - within a week. I got an MRI and had my diagnosis in nine days.

 

But what if I hadn't been a doctor, well-connected and insured?

 

I have no way of knowing for sure, but I suspect my diagnosis would have been missed, possibly for a long, long time. Many people go months or years with symptoms of MS and no diagnosis. Without insurance and ready access to care, I imagine I would have ignored my symptoms for as long as possible.  Like many of my patients have done over the years, I would have waited until I was desperate, panicked, or incapacitated before seeking care.

 

When I did finally decide to see a doctor, I may have ended up in an emergency room, waiting hours to be seen, shuffled through an unfriendly system, and still left me without a diagnosis, but with a hefty ER bill.

 

I could have ended up disabled from MS, unable to pay the ER bill, unable to work. Eventually someone would have ordered an MRI – maybe during an expensive hospital admission for an MS complication – and the diagnosis would have revealed itself. But then, would I have been able to afford the medications needed? Would I have progressed from relapsing, remitting to secondary progressive MS (which is often more severe and much harder to treat)?

 

I feel certain that my brain MRI would have a lot more white spots and black holes – those tell-tale signs of damage from MS – if I had not received timely medical care.

 

I frequently share my story, especially my presenting symptoms and diagnosis, with other doctors and nurses, hoping that the possibility of MS will come to mind when they see a young or middle-aged patient with unexplained neurologic symptoms. I encourage EVERYONE, no matter how healthy, to get health insurance – and keep it, no matter what. I also urge those who are struggling with mysterious health problems to find a good doctor who is persistent and curious, who will hunt down answers and resources.

 

I give thanks for having the good fortune to receive high-quality care for my MS and to lead a healthy, productive, and fulfilling life. But more than anything, I long for the day when every single person receives the health care they need and deserve. 

 

I encourage others to share their stories below, especially challenges accessing the health care system or reaching a diagnosis of MS or another condition.

 
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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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