A patient’s story

Submitted by Kasey Boehmer

A couple of weeks ago, I had the opportunity to catch up with a member of a family who have all together struggled with their own chronic health conditions. Their story resonated deeply with me, as it highlighted both the incredible amount of work they have taken on to manage their conditions and get the best care, as well as how this work drew on capacity that they could have better spent on the things where they find joy. This patient was kind enough to summarize the story and allow me to share it:

Caring for a 21-year-old daughter with complex, chronic conditions that have required years of finding the right specialists and other medical practitioners.  Drug and other regimens have been exhausting for her, her mother and me.  I, too, suffer from different complex and chronic conditions that are similarly exhausting.

That we are both successful, high-functioning individuals does not ameliorate our struggles in any way, other than we are more adept at working with our medical teams (which have created on our own, owing to the lack of a Mayo model despite “world-renowned” medical institutions in our area).

My wife, who has to care for both us, has had to neglect her own medical needs from time to time as a result of her attention to me and my daughter, and the costs associated with our care.  We have a son who is perfectly healthy, but he has had to bear the burden of having two family members draw down multiple family resources:  cognitive, emotional, behavioral, and financial.

In essence, we have had to create your own Minimally Disruptive Medicine. We have able to do so because we are both professionals, with strong networks of physicians and other health professionals, and with highly flexible work schedules as contrasted with most patients and caregivers.  Nonetheless, even with these capacities, our chronic care needs have detracted from using those resources for other things that we love, value, and enjoy doing, including our careers. Wouldn’t it be nice if the healthcare system created MDM for everyone, so that we and others didn’t have to marshal so much of our capacities for making it happen?

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