In an age where technology dominates our medical world, communication between patient and doctor often leave me wanting. Over the last few years as a patient, I have learned a number of strategies to help bridge the communication gap with doctors.

For Patients:

  • Speak up: Nobody likes confrontation, but it doesn’t have to be an argument if you are calm and respectful with your questions and requests. If he interrupts you, interrupt back. Yes, really. Afterall, it should be a two-way communication. So speak! For example: “Doctor, thank you for your time today. Would you mind sitting down while we speak. It helps me to relax and not feel like I am being rushed out the door.” The doctor should be open to hearing that.

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As one might expect, navigating life with an invisible illness is one challenge followed by another.

Beat one. Greet one. Every. Day.

Nothing prepares you for the constant fatigue, pain and mystery symptoms du jour – or the endless questions regarding medications and treatments (and let’s not even get started on insurance issues – holy mother of all things bass-ackwards!). You would think that it helps being a nurse – that I would understand more, making it easier for doctors to explain health matters to me. To an extent, that may be true. But at the end of the day, I am just as exhausted and frustrated as the next person who’s trying to keep the faith while waiting for a cure.

Despite the fact that answers hang in the balance, there are a few things I have realized along this journey. Walk in my shoes for a minute…

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With hospital systems and insurance companies requiring increased quantity of patient appointments rather than encouraging better quality interactions, no wonder I have encountered many frustrating doctors in the course of my disease. Don’t get me wrong, I have met my fair share of great doctors who provide me with the incredible care I have received over the past 2 and a half years. But most physicians are booked at 15 minute intervals–and it literally takes me 15 minutes to list the diseases I have and the medications I take.

This is a system wide problem, not a physician one (mostly).

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An NIH study points to autoimmunity as the underlying cause of more than a hundred life-altering, chronic illnesses and that 75% of those with autoimmune disorders are women.  I’m one of them.

I launched this blog shortly before January 2011, when I started a new job on the advanced heart failure unit of Sentara Heart Hospital in my home town of Norfolk, Virginia.  Having recently returned to Norfolk after four years at the University of Virginia, two years working for a hospital in the Washington D.C. metropolitan area, and six months exploring San Francisco, I was excited about taking care of patients in the very hospital where I was born. Excited about moving into a condo in the trendy Ghent neighborhood.  About my life as a 26 year old with a dream job, financial independence, and great friends who shared a passion for world travel.

Then BAM!

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Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow treatment protocols? Take better care of themselves? Especially now that payment for my services may be negatively affected by bad outcomes and poor patient satisfaction?

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Zebra Retreat.

No, it is not a new safari resort in Africa. It is not a ride at Disney. Not a new game rivaling Angry Birds. And it is not a Starbucks Frappuccino flavor (although I would imagine it with hints of banana and coconut).

Zebra Retreat occurs when a rare diagnosis, or zebra, figures prominently, but the physician retreats for various reasons – perceived inertia in the system, barriers to obtaining special or costly tests, self-consciousness, or even under-confidence about entertaining a remote and unusual diagnosis (Source: Pat Croskerry, Dalhousie University).

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