
When your doctor doesn’t listen

10 comments
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I’m so sorry you’ve had to deal with all of this for YEARS! It doesn’t seem right – but although I don’t suffer from anything except pre menopausal systems and migraines occasionally – my husband suffers from feet and leg pain – passed down from his maternal grandmother and his mother. He’s had every test known to man – they can never find anything – and the next test is to see if he’s imagining it!
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I think the threat of malpractice suits actually hinder so many diagnoses.
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Well, I don’t know what it feels like to be “normal” so can’t help you much with that. HAH! I have been through many, many doctors since the age of 30, long, long, long ago. Took me 4 years to get my fibro diagnosis. Four years of being patted on the head and being told I was nuts, just a hormonal woman and I should go home and bake some cookies and I’d feel better. Never mind the fact that I was waking up every night screaming, feeling like someone was thrusting swords through my hips! “Oh, that? That was just a nightmare, sweetie. It’s all in your head.” No, it was all in my hips!!! I was ready to give up and take the pipe when I went to one last doctor who listened to me, pressed a few spots on my back and then, when he peeled me off the ceiling, said, “I know exactly what’s wrong with you!” I’m embarrassed to admit I cried from the relief of someone finally telling me there WAS something wrong and I was not just your local freakazoid with more than one bat in my belfry!
There’s been more, but this is the one that sticks in my mind. Four long years of agony, but being told I was imagining it, menopausal or simply crazy was worse than the agonizing pain. And they still don’t know what to do with me after all these years because I can’t take most of their drugs. I have horrific drug allergies so with their eyes ever vigilant on their malpractice premiums, they just let me “tough it out.” OYE!!!
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Thanks so much for sharing your story, Tamara. I agree with what you said about needing to communicate your issues clearly and to give as much info as you can to your doctor. I also agree that a dr’s knowledge can be intimidating but I think his/her attitude can be even more so. So many drs have a god complex and do not appreciate being challenged. Thankfully there are some who are there to help and, though they may not have the answer, they do appreciate your input and work with you.
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JoJo,
I may be a nurse but I hate going to the doctor, after having so many of these experiences myself. When I was about 10 years old, I went through a period of weeks, maybe months, can’t remember how long anymore, where I was very fatigued all the time to the point of having to go home early from school on a frequent basis. After doctor visits and blood tests, no diagnosis was made. I felt like they thought I was making it up and just trying to get out of going to school, which made me mad because I was one of those rare kids who LIKED going to school and would rather be at school than at home in bed, not allowed to do anything. When I was 15, I suffered from excruciating back pain. Xrays showed nothing wrong and basically the doctors acted like it must be all in my head. Finally, after several months of agony, a doctor finally ordered more Xrays and a CT scan which included my hips, and it was discovered that my right hip was basically dislocating itself because the socket was too shallow and had worn out. The pain was in my back, not my hip, so they didn’t think to check my hips before then. I almost ended up in a wheelchair for the rest of my life and would have if they had not diagnosed it when they did. Then, for years after the surgery to correct the hip problem, I had severe pain in my back and BOTH hips. I went through a week in the hospital just getting tests run to find out why I was still hurting only to be told there was nothing physically wrong and the surgery was successful and I should not be hurting. That was 25 years ago and I still have pain to this day, although I’m so used to it that I don’t really take much notice of it unless it is more than normal. I know it is there but I have a high enough pain tolerance to deal with it. After years of pain meds in my teens and early 20’s and being told there was no reason I should be hurting and even having one or two docs act like I was just there to get pain meds (I HATED pain meds and told them over and over I didn’t want them, I wanted an answer and permanent relief) I gave up and decided to just live with it. About 15 years ago, an orthopedic surgeon diagnosed me with a spinal problem which helps explain some of the pain but doesn’t require treatment unless it gets much, much worse, which is unlikely. And my current doctor diagnosed me with osteoarthritis a few years ago, in my hips and knees. It has been a frustrating journey and one that made me dislike most doctors. To be fair, I’ve had some good doctors and worked with some amazing ones, but I am not one to blindly trust doctors or think they have all the answers.
After so many doctors, and after working as a nurse, I have learned that you have to be your own advocate and you have to speak up. Trust your instincts. And sometimes you have to stand firm, but you can do it in a polite, respectful way. I’ve had to do that for myself and for my kids many times.
I think one reason people have such a hard time talking to doctors is they are intimidated by the doctor’s knowledge and status. Doctors aren’t gods. They are human beings like anyone else and while I do have a healthy respect for them, I know firsthand they are not perfect and they are capable of making mistakes and overlooking symptoms and sometimes they do miss a diagnosis. The more info you can provide your doctor, and more clearly you can communicate your symptoms and problems with your doctor, the more likely your doctor will be able to help you.