 Mutterings and Musings on Being a Patient
By Cheryl Switzer
I've learned a thing or two in the last five years about working
with the doctors. I've tried to make it easy for them to get a
handle on what it is I present. I've asked for copies of every
test result, "borrowed" my X-Rays and scans for safe-keeping
here at home and organized everything into a tidy binder with tabs
and headings. I don't want to spend what precious little time I
have with them, watching them fumble around looking for numbers.
But there's only so much I can control.
After establishing a very good relationship that lasted four years
with the pulmonologist I finally settled on for my treatment close
to home, he died. To say I was shocked does not nearly convey how
I felt and still feel. I was counting on him, selfishly perhaps,
to be there to see me through the end stages of my chronic disease.
So were a lot of others including a friend I made along the way
who was also his patient.
As good as this relationship with my doctor was, it was not perfect.
I never asked him the questions that were at the tip of my tongue.
Why is it, for example, that most doctors do not care who we are?
When I became "that interesting Pectus case", everything
else about me became irrelevant. My level of education, my work
experience, my hopes and dreams were not important, not to them.
I think I might have been able to pose this question to my now
deceased doctor if we had more time to chat. He was always squeezing
me or someone else into his busy schedule. I think he did have
a sense of who I was although he never really asked me very much
about my private life. I was not shy about being myself around
him. I wanted him to like me.
One day when I was hanging around here, I flipped on the radio
and wished I had tuned in a bit sooner. A psychologist was talking
about his relationship with his back doctors. He said he tried
to get his doctor to care about him as a person and attempted to
engage him in banter to no avail. In the end, he felt that the
doctor had no stake at all in the outcome of his medical treatment.
He really hated the way it made him feel.
I have to say, I feel some resentment now when I take my scheduled
trips for checkups, walks and echoes at the large University hospital
an hour's drive from here. I see a busy office where people are
just doing their jobs including the doctors who casually stroll
in and out of the rooms. I am their client and our conversation
must stay limited to aspects of my medical care. Everything else
is taboo. Too little time, no interest.
What I've settled on is working for their respect. If I can't
have anything else from them, I do want their respect. I try to
keep on top of the PAH scene so I can speak to them intelligently.
It helps a lot! And presenting my own binder of historical and
current test results helps a lot too.
I need all the help I can get!
I have written some Tips for working with the docs in our Tips & Tricks
Section. If you would like more info on this subject, go to: Tips
and Tricks: Communicating and Working With Your Doctors
If you have some mutterings and musings you'd like to share with
others, they could become part of another feature. If you would
like your words to be anonymous, we will respect your privacy.
Submit your words to features@phcentral.org.
May 5, 2005
If any of you have a funny story or a poem
you’d
like to share and would like to contribute to a future feature,
please send it to: features@phcentral.org.
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