Personal Reflections of experiencing "Practical" in Healthcare

Singapore from Cloud Forest

Today I am in Singapore. It is a place I never even thought about traveling to, but I got to come as Faculty with the International Phronesis Institute (IPI),  I am joined by my husband Barry- who has worked in medicine his entire career, Walter Lee - Founder and CEO of the IPI and a physician at Duke University, and Michael Zhu - a Duke medical student.  We have come this week to hold focus group meetings for a future program called Healthcare Excellence and Leadership (HEAL).  Our goal is to help develop and support the kind of doctors and healthcare professionals we all want to have caring for us.

Singapore is a BEAUTIFUL place. The people are kind, warm, generous…..and practical. Practical…..the word that has come up so many times this week I cannot even count. We have heard it from cab drivers, maids, cooks, museum docents, and medical students. It is a hallmark of Singapore culture, and I must say, it has worked well. You can see it in their buildings, in their efficient systems, in their education….. everything is just practical, because they are practical people. 

I, on the other hand, am NOT practical! I am an artsy person and pianist by trade.  If a room should be square, I want it to have lots of curves.  If a recipe should be made one way, I want to change it. My driving force is beauty and creativity, and if practical becomes not beautiful and not creative, then to me practical is out the window! I am a pioneer and I try to break practical at every turn to see if I can make things better, and definitely more beautiful! 

There is another reason why I am not “practical”.  For the majority of my life, I have dealt with chronic illness. From having continual strep infections as a small child, to having Epstein-Barr virus related chronic fatigue syndrome as a teen, and most recently, having long covid. 

I did the practical thing every time I got sick……I went to the doctor. As a small child, I was given a shot every time I got sick. I would get better for a little while, but then it would come back. As a teen, I got Epstein-Barr and I spent a week or more in bed at a time. Eventually I would get better and move on. But most recently, none of that worked. I ended up with a cascade of symptoms too numerous to mention, defying medical knowledge, and becoming a somatic super syndrome, where every system in my body was affected.

For 10 years, in my 30’s, I was dealing with chronic fatigue and fibromyalgia, which at that time, no one had ever heard of. I did the practical thing and went from doctor to doctor only to be told that there was nothing wrong with me, that it was stress, or that it was a mental issue and I should see a psychiatrist……for 10 years! Obviously, this was no longer “practical”,  so my solution was to quit going to doctors altogether and start researching things on my own. 

Little by little, the meager information I could find started to add up. We spent thousands of dollars on treatments and supplements that sometimes worked and sometimes didn’t. Was that practical? Absolutely not! BUT, I was desperate to be well, and having to figure things out on my own, I didn’t care if it was practical or not….I just had to get better, because sleeping 18-20 hours a day while raising three small children  was NOT practical!

Eventually I got better after a 25 year stint of chronic fatigue, and I stayed in remission for about 15 years…..until covid. Now mind you, I was not deathly ill like many people.  When I got covid the first of five times, it was an annoying cough ( which I still have over two years later) and I felt like I had a bad cold. But this past year, the super syndrome kicked in, the chronic fatigue came back, and this sent my heartbeat racing, I literally could not walk across my house without having to sit down. This was definitely no way to live. 

So I reverted to my practical ways of going to doctors again, which had the same result as my earlier foray…… “There’s nothing wrong with you. I mean we can see that your heart is messed up, but there’s actually nothing at all wrong with your heart. There’s no reason for your cough, but here, take this drug, take that drug, try this inhaler……” None of it worked. 

Desperate to not go back to what I had experienced earlier in my life, I began researching again, but this time, nothing was working. When there’s nothing actually physically wrong with your heart, how do you fix it? When there’s no actual reason for your incessant cough, how do you fix that? When you have no strength to walk across your house and there’s “nothing wrong with you”, how do you fix that? 

Fortunately, Barry took me to a doctor friend of his who was willing to look beyond the practical. He wanted to find out WHY my heart was going crazy, WHY I couldn’t quit coughing, WHY I was always so exhausted. He did the practical things…..lots of blood work, lots of scans, tests and other things, so that he could get the practical knowledge he needed. But this time, instead of telling me that there was nothing wrong with me, he came back and said, “Wow, you are REALLY ill.” 

After hearing that, I had immediate relief. FINALLY someone was listening to me. FINALLY someone believed me and I wasn’t having to doubt my sanity any longer! I have continued to research on my own, I have joined a Facebook group of other people with long covid, and I have shared all of it with my doctor. He is looking at me as a challenge to figure out and not someone to write off. He has listened to me over and over and is willing to try crazy new things, plus adding in some practical things as well. I defer to his medical prowess, and he defers to the research I am doing. Together we are learning, and the best news…..it’s working! I’m light years ahead of where I was at this time last year. I’m not out of the woods yet, but we are figuring this mess out together, I am getting well, and THAT is practical!

International Phronesis Institute Faculty Members: Barry and Vivian Doublestein