Saturday, April 19, 2014

Lesson Learned

I'm really excited to be participating in the WEGO Health Health Activist Writer's Month Challenge.  I'm hoping that the challenge factor will motivate me to write more often (every day this month, in fact!), and that that will develop into a habit of writing regularly after the month is over.  More importantly, I'm hoping that by sharing my experiences, thoughts, and insights about living with chronic and invisible illnesses, I'll be able to bring comfort to someone struggling with the same issues.

*Note - I'll be including this introductory paragraph at the beginning of every post, so that anyone who's checking in will have that background info.  If you come back another day (and I hope you do), you can skip this part!

Today's assignment: Lesson Learned.  What’s a lesson you learned the hard way? Tell us a time when you made a mistake and promised never to make that same mistake again. Write about it for 15 today.

One very important lesson I have learned, though it took quite a while and quite a few bad examples for it to actually sink in, is that doctors are not the ultimate authority in my health care and treatment - I am.  Don’t get me wrong: I admit that they have a lot more education and experience than I do with regard to human anatomy, diseases, and treatments.  They do not, however, have more experience with my body. 

When I was growing up, I always took it as a given that doctors were experts: they knew everything, so I should basically take their word as law.  Then again, when I was a kid, I viewed pretty much all adults as infallible authorities: parents, teachers … they were in charge, and their position gave them the right to tell me what to do.  It never even occurred to me to question their judgment. 

Somewhere around adolescence, I learned better.  I defied my parents when I knew better than they did (my mom has since admitted that she was wrong), and even challenged a professor with whom I disagreed (that didn’t work out so well for my grade, but at least I had the satisfaction of knowing I was right).  For some reason, though, I still believed that my doctors were beyond reproach.

If my only experience was going to the doctor when I had a sore throat, that might not be much of an issue.  Unfortunately, I’ve had much bigger health problems than that.  Several years ago, I started experiencing a number of symptoms that I couldn’t explain.  My entire body ached as if I’d just done an overly intense workout.  It took me hours to fall asleep, and I’d wake up a couple of times throughout the night.  Even if I did actually sleep through the night, I was as exhausted as if I’d pulled an all-nighter.  I had headaches every day, and an overall feeling of just not being well.  After a slew of tests, referrals, and specialists couldn’t figure out what was wrong, they decided it was all in my head.  A few more doctors said I was just depressed.  The worst part was, though I knew how much pain I was in on a daily basis, and I knew what depression was and that I did not have it, these doctors actually made me start to question myself.  I wondered if I was going crazy, if I was a hypochondriac, if I was in denial of something I didn’t even understand.  Then a couple of nurses I knew (not as a patient) suggested that it sounded like I had something called fibromyalgia.  I’d never heard of it, so of course I ran home to look it up.  Though I’d exhibited nearly every symptom and overlapping condition, the doctors still didn’t see it, because they weren’t as familiar with the disorder.  It took four more years before I finally got that diagnosis; it took four more years before any doctor attempted to treat my symptoms.

Somewhere along the way, I remember listening to the radio in the car on my way home from work, when John Tesh came on with his Intelligence for Your Life segment.  He offered “5 Signs it’s Time to Fire Your Doctor,” reminding listeners that in essence, doctors are our employees, and that if we are not satisfied with their work, we could – and should – let them go.  This was a complete revelation to me.  I always thought I had to be a good patient, had to try hard to earn my doctor’s respect.  I had never even considered the idea that it was really the other way around.

I thought back to the number of times when I was seen by “bad employees,” and the effect these doctors had on me.  A gynecologist with a personal bias against my choice not to have children disregarded my complaints of severe pain, thereby missing the fibroids that later led to my hysterectomy.  An emergency room doctor dismissed my acute pain because he saw me laughing and tried to discharge me without an examination.  Countless doctors suggested that I was depressed, rather than do a simple tender point exam for fibromyalgia.

These days, I take a much more active role in my own healthcare.  Not only do I research every symptom, diagnosis, and medication, but I research the doctors, too.  Just as an employer would do a background check before hiring an employee, I do my own reference check, so to speak.  Websites such as Health Grades, Vitals, and Rate MDs allow me to see not only when and where a doctor was educated and what his or her specialties are, but what other patients have to say about their experiences with the doctor.  Even when I decide on a doctor, it is not a lifetime commitment: if I am not satisfied with the treatment I am receiving, I move on to someone else.

In general, I pride myself on being very intelligent and a quick learner.  This lesson, unfortunately, took me far too long to really grasp.  Now that I have, however, it is my mission to share what I’ve learned with anyone who seems to need the advice:
  • If a doctor doesn’t listen to you, find another doctor.
  • If a doctor suggests that nothing is wrong when you know that something is not right, find another doctor.
  • If a doctor dismisses your ideas (such as trying alternative treatments), find another doctor.
  • If a doctor is not helping you, find another doctor.

Most of all …
  • If a doctor makes you feel bad about yourself, FIND ANOTHER DOCTOR.
**If you like what you read, tell a friend.  In fact, tell me, too - post a comment below!  If you don't ... well ... I'm all for honesty, but ... please be gentle!