Thursday, February 7, 2013

Teachable Moments In Chronic Illness Land

At the beginning of this academic year, I started taking part in a program called the Family-Centered Experience.  I noticed a flyer about it at one of my clinic visits over the summer and applied for, and was accepted, into the program.

The program is “a required course in the University of Michigan Medical School curriculum.  Through FCE, first- and second-year students engage in understanding the personal side of medicine through firsthand encounters with patients and their families” (

The patient taking part in the program has to have a chronic illness.  And normally the program requires a two year commitment, but I could only commit to this year as I plan to finish my dissertation this summer and move elsewhere.  However, several students were “orphaned” (for whatever reason, like the patient moved), and needed a new patient for one year, so I was paired up with two students that needed to go through their second year with a new patient. 

“Families who volunteer to participate in FCE open their lives and give our students invaluable training that cannot be duplicated in any classroom or clinic.  In the role of mentor, volunteer families teach students how to see the patient as a whole person and how illness affects all aspects of their daily lives, beyond just the diagnosis of their disease.  Our doctors-in-training apply what they learn from these mentors to their clinical training and beyond” (

I was amazed that such a program existed, and at the hospital where I receive the majority of my medical care.  It seems to me like a rather evolved sense of patient care to realize how important getting to know patients as people really is. 

These aren’t scenarios or role plays.  These are real doctors and real patients. 

And it’s not just about the illness or the specialty.  It’s about the patient.  And it’s not just about the physical.  It’s about quality of life. 

I think it’s important for doctors to learn these things early in their careers.  By the time they are actually doctors practicing on their own, it’s too late to develop a sense of patients as human beings.  If you’ve been taught to look at patients as their registration numbers or their illnesses, that’s how you are going to treat them.  But it shouldn’t, and doesn’t, have to be that way.  Doctors can walk the walk and talk the talk medically, but that doesn’t mean they’ll be able to relate to patients in any meaningful way. 

There is a very helpful guidebook that is provided to both patients and med students.  We didn’t work directly off of it because of the unique situation of meeting me in their second year.  But it provided a good idea of what the program is about.   

For our first visit, the med students came to my apartment and spoke to my boyfriend and I.  I shared my story with them, they asked questions, and then they came to one of my rheumatologist appointments.  It felt a little strange as I don’t normally take anyone to my appointments with me, but at the very least, they provided good company while I waited for my appointment to start.

It’s caused me to look at my experiences as a patient, both positive and negative, in a critical way.

This has been a learning experience for me, too.  My rheumatologist measured the width of my jaw opening.  He’s never done that before.  Mine was 20 centimeters.  Then he measured one of the med students.  He was in the normal range, which is 35 to 50 centimeters. (At least now I can’t be accused of having a big mouth)

Then he tested the range of motion of my elbows and hands.  He had the other med student stand up and do the same.  I was shocked to see how limited my range of motion was compared to her.  I’ve never seen myself in comparison to someone “normal” like that before.  It was really striking.  There’s no denying that I have these illnesses and that they have an impact on my daily life.  It’s funny that that’s the lesson I take away from this experience, because I guess I was already supposed to get the fact that I’m chronically ill.    

He also asked me how long it takes me to get going in the morning.  I told him that it takes about an hour before I can be functional enough to really face the day.  Then he asked both med students how long it takes them.  They both thought for a minute and said they didn’t really have to think about that.  Maybe it takes them five minutes or so.  Imagine, my rheumatologist said, being so stiff that it takes you an hour, not even just to get clothes on, but an hour to get just enough energy to think about getting clothes on.

This has made me look at my illnesses in a new light.  They are powerful.  They affect all facets of my life, whether I admit they do or not.  But it wasn’t until I was given the opportunity to look from an outsider’s view that I realized how much different my life is from someone who is my age and not sick.  There is so much less to think and worry about.  They can stay up until three a.m. studying, get up at six a.m. and face a 12-hour day ahead without second thought. 

And we wonder why doctors can seem so clueless about our illnesses, when, even we are, as patients, sometimes clueless about our own illnesses.  I guess since I have been feeling physically okay, I was a bit in denial about the fact that these illnesses are a part of my life.  But they are and they will be forever. 

And we talked about a lot of illness experiences.  The fact that medications are so expensive and that it is very hard for patients to learn to self-inject.  It was really the first time that my rheumatologist validated some of these more emotionally-laden experiences.  It’s nice to know that he’s thinking about these things.  And it encouraged me that he stressed that med students should be aware of these issues, as well. 

He said he hoped that by learning about my experiences would make these med students more compassionate than doctors like him.  And I told him that comparatively, whether he is willing to admit it or not, he is pretty high on the compassion list as far as doctors go. 

And I’d like to think that he learned something too, that he sees the impact that the way he cares for his patients will impact the way this generation of med students, the next generation of doctors, will care for their patients.  

And I think programs like these are great.  They provide experiences that can’t be learned or taught inside the classroom.  There should be more of them.  I think something like this should be a standard curriculum in any medical school education.  And it needs more awareness within U of M, as my rheumatologist had never heard of the program before, despite the fact that I know he works closely with med students.

And by requiring students to make home visits and attend doctors’ appointments with patients, allows students to come down to the patient level, and experience things on the ground and in the trenches, which as doctors, they may never get to experience otherwise. 

I want the experiences I’ve had with chronic illness to count for something, and whether I’m impacting doctors or patients, I believe that we have to have a holistic approach when it comes to doctoring.  We’re all in this together, even though sometimes it doesn’t feel that way.  When we have to deal with cranky nurses and stupid insurance companies, the human side gets lost.  Patients are people.  And doctors are people, too.  We are the same species, even though it sometimes feels like we are from different planets.  The doctor-patient relationship should be a mutually-beneficial and symbiotic relationship. 

I’m grateful that I had this opportunity to share my experiences.  I hope that my students felt they learned something from me.  I know I’m not necessarily the “typical” patient.  And it was nice to see doctors on the other side of the continuum, who are new and eager and ready to learn, who are not totally set in their ways and are still moldable.  It gives me hope that the next generation of doctors will see the importance of compassionate care and getting to know their patients on a deeper level than “Patient is a 27-year-old Caucasian female with lupus and rheumatoid arthritis.”

Every patient has a story.  And those stories deserve to be heard.


  1. You are a great teacher, even though you didn't ask for the lesson plans life handed you. We are so grateful to have you as part of the FCE Leslie. Thank YOU.

  2. This is a really great thing, and something I am glad to find out exists. Good for you for taking part, hopefully the programme will benefit many people in the future.

    Hayley-Eszti x

  3. seeing the patient as a whole person?? What a concept! Glad some medical schools are getting it.

    Btw, how do you measure your jaw opening? The distance between the front upper and lower teeth with an open mouth? In which case, I have you beat: 3cm.

    Still manage to have a big mouth,though. ;)

  4. Both of my children are doctors in training and had a similar program, tho not as long as yours. Since I have lived with lupus for over 33 years, I am grateful for this as well. It is such a hopeful sign that medical training is becoming more human, both for the student doctors and for their patients.

  5. If the allopathic medical community wants to remain relevant in the lives of patients, they will need to recognize that there is life outside of the examining room and more complicated than swallowing a pill or taking an injection. I'm glad to hear there are programs like these to help them bridge this immense gap in health "care" delivery.

  6. Great post. I will be experiencing a few of these issues as well..

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