Tuesday, July 26, 2011

The Doctor Who Didn't Listen

Oh, how I wish I'd known then what I know now.

Ten years ago, in the spring of 2001, the world fell out from under me.  I was hit with unbelievable exhaustion.  No matter how I ate, how much I exercised, or how much good sleep I got I was so tired I couldn't function.  I couldn't parent.  I went to bed for about a year and a half.  More on that story another time.

After a few months (when I knew it wasn't getting better, and after much prodding from my husband and other friends and family) I finally went to my doctor.  I told him how tired I was.  I told him I couldn't get anything done.  His words are forever burned into my mind.  "You have five small children; of course you're tired." 

And that was it.  Since nothing showed up in a cursory glance, in a routine physical, there must not be anything wrong with me.  I had tried to explain that it was more than that.  It was more than tired.  I was not a human anymore.  I was a shell, a pile of skin and bones, walking around trying to participate in life.

He didn't listen to me.  I felt chastised, like how dare I waste his time?  I felt diminished, like a small child told to get over it because life is hard.  I felt like I'd been told to quit whining.  To suck it up and get back to work.

I would never stand for that now.  I would insist that he listen, I would repeat myself, I would tell him he misunderstood.  And if he still didn't listen, I would leave him and take my business elsewhere.

I was incredibly vulnerable at that time and did not know how to fight for myself.  I did not know I could insist on certain tests.  I did not feel safe questioning what he told me.  I believed doctors truly knew more about my body than I did.

I have had many incredible doctors.  Doctors who listened and cared.  Doctors who were more concerned about making me feel better than I was.  I have friends who are doctors.  I have a brother who is a doctor.  I have great respect for doctors.

But I no longer think they know more about my body than I do.  When I say something is not right, then it should be respected.  Even if I can't prove it or put it into words.  My doctor and I are supposed to be a team.  We are supposed to work together to find the solution.

I will never know if he could have helped me.  Maybe if we had run a blood test at that time something would have turned up.  Maybe I wouldn't still be fighting the debilitating fatigue 10 years later.  Maybe there were answers then that were too far gone by the time I found a doctor who would listen to me.

I will not allow myself to be ignored by a doctor again.  Ever.

12 comments:

Bonnie said...

I became our family doctor a little over 20 years ago after a pediatrician single-handedly destroyed my oldest daughter's immune system while blaming me for bad parenting. I learned. I became a doctor parent. I have the greatest respect for professionals of all trades, but I also know that they possess no particular esoteric key to the mysteries. I can replace plumbing, drain tonsils, install ceiling fans, tear up subflooring and lay tile. And I'm so glad I don't have to take anybody's word for anything. You go girl. You'll get to the root of this when it's time. We love you.

Linda said...

Robin, I'm sorry to hear you are still today fighting the fatigue. It's good to hear you stand up for yourself with regard to doctors. Too many people are fooled by the certificates and titles. I think as a kid we are taught to put doctors on pedestals, but they are merely people--some good and some not so good.

Sherri said...

i grew up being told that doctors know all... see all... fix all.... wrong, wrong, and wrong again...

but it's that teaching that caused me to be much the same way as you have described here... for years i had symptoms that were written off.... "let's just watch it and see what happens"... no testing, no nothing...

i think i would have received a diagnosis much earlier in life and that would mean treatment much earlier... i don't know that it would have made any difference on the progression and the current level of my disease...

but, like you, i will NEVER allow a doctor to fluff off my complaints or concerns ever again

Dawnelle said...

I've heard this comment too many times. It's a sad thing. For me myself, I didn't realize I didn't HAVE to fill a doctor's prescription until I was in my 30s. However, I now believe in the concept of an advocate--whether I can be that person or I need another. For example, when I had Toby, I asked Ivory to be my doula. She made sure that EVERYthing I brought up was addressed. I'm so grateful she was there to help me at such a vulnerable time. I hope that should I ever have an unforeseeable time of medical vulnerability, I'll have someone to be my advocate. In fact, I've worked it out so that if my sister is in the area, she will be that person. ;)

MaggieJo said...

I had a neighbor who saved her daughters life by telling her doctor over and over again something wasn't right. By the time they found the heart condition, she would of had a few months without treatment.

The Blonde Duck said...

Considering a doctor put me on a medicine that gave me chronically bleeding ulcers for three months and nearly killed me, making me get iron infusions for the past 3 weeks, I learned the hard way doctors don't know everything!

Running Circles said...

Isn't it a great feeling being able to trust your own judgement especially when it comes to one's health? Robin I hate to hear that you are suffering but I'm glad that you've found your assertive voice again. You are so right that no one knows your body better than you do.

Beth Zimmerman said...

I've had a headache, and chronic pain, for 3 years now as the result of an accident and doctors keep telling me there is nothing wrong that they can fix. So they throw pills at it and I live with pain ... wondering if it's in my head. But it's NOT! I know it's not! I was fine until July 1, 2008! There has to be something there. They just don't want to invest time and energy in figuring it out.

Sorry you're in the same boat. I've learned to be more forceful too but there have been too many doctors ... too many I don't knows, and some things just ares. I hate doctors! Well ... a lot of them!

Beth

Birdie said...

This post brought tears to my eyes. I have been tired for years. Some days are so bad I will get up at 11:00, go for a nap at 1:00 until 3:00 and go to bed at 9:00. I never feel good. The fatigue I feel just keep getting worse. The days I have to work are really terrible. I am so tired there are parts of my day that I don't even remember. I have Hypothroidism and I take medication. I have depression and I take medication.
I have had four different doctors tell me that there is nothing wrong with me but not one has done anything more that basic blood work and a general health check.
I don't want to live the rest of my life this way. I think I must be crazy. Maybe I am just a hypochondriac. Maybe it is all in my head. I hate this part of my life.

Leah said...

Amen! I had a similar experience last year. I went to my (male) doctor and told him that I just felt off. I was tired and I'd gained so much weight and I truly wasn't eating cake and good food for it either. He basically blew me off and told me to join Weight Watchers. Turns out it was what I suspected, and that I was having major reactions to a medication I was taking. I promptly changed doctors. It's so true. You know your body better than anyone. Listen to it and insist on being heard!

Libby said...

I have been fortunate to always have a doctor who listens. Just before I got married - happiest time of you life - right? I went to my doctor with weird ailments and she told me I was depressed - I literally scoffed. Her prescription was vitamins, fortnightly massages and she told me to take up yoga! She always had a very wholistic view of medicine and to this day I swear by yoga for my mental health.

Anonymous said...

I just lost my 12 week pregnancy because my doctor didn't listen to me. I have PCOS which comes with hormone imbalance. It took me almost three years to get pregnant. When I did, I asked my doctor if there was an increased risk of miscarriage as I have two friends with PCOS who miscarried. I was told no and he ordered no hormone testing. So I switched doctors. The new doctor told me the same thing. I had a feeling they were both wrong. But I accepted it. My baby died at eight weeks but I never miscarried. I'm 13 weeks tomorrow and going for a d&e. I wish I would have trusted my instincts and demanded the tests I knew I needed.