When your doctor doesn’t listen

Are you an emotional female droning on to your doctor year after year about "little things" like fibromyalgia, thyroid issues, insomnia, menopause, or hypoglycemia?  And have you encountered any of the following Dr. Talk? * All the tests came back negative. (Translation: I don't know what else to do for you so you'll just have to live with it.) * Maybe you should take a few days off work. (Translation: I don't think there's anything wrong with you, but you might feel better if you go shopping and buy a new hat.) * Are you worried or stressed about something...how's your family life? (Translation: Since the tests are all negative, you must be upset about something in your life.  Depressed people complain of stuff.) * Are you sure you're not depressed? (Translation: You're a hypochondriac or it's all in your head.) Well, I have...for over 30 years!  Since I was a teenager, I've been going to the doctor complaining of various things for which the blood tests have all come back negative.  It started off with feeling shaky when I don't eat every few hours and feeling awful when I exercise.  In my 20's I added feeling cold all the time and in my later 30's it grew to include menopausal symptoms as well as insomnia and a feeling of exhaustion.  I'm now 48, many copays poorer, and don't have insurance anymore. Each time I was pregnant, I was tested for diabetes and was told it was negative.  Though nurses were shocked to find my blood pressure so low even at full term that they had to take my pressure in TWICE in each arm to validate why I could still stand up, they dismissed any issues I had saying low blood pressure was good! When I was 37 I began a series of doctor visits asking about peri-menopause, but the doctor refused to even test me for it as 37 was far too young to be starting menopause.  Well, they say it takes about 10yrs and my grandmother was DONE at 47, but why bother with little things like family history, symptoms and intuition! When I was 46 and falling asleep all day long, a new doctor finally diagnosed me with fibromyalgia, insomnia, mild hypoglycemia and peri-menopause.  Thankful I finally found someone who agreed there was something wrong, I quickly found that modern medicine was ill-equipped to do anything about it.  He didn't recommend the medicines he could authorize as they had too many side effects so he simply left me alone to deal with it on my own. Along the way, out of sheer desperation, I turned to researching the internet and found several things that have helped.  I found a cream that took all but one symptom of peri-menopause away.  I found a good vitamin that was formulated just for those with thyroid issues and I found out how to discuss my issues more effectively with my doctor!  So today, I'd like to share a bit of what I learned about one of my communication pet peeves: Dr. Talk. First, I realized that I first had to find a doctor who believed in healing in a more natural way and who believed that God created the body to heal itself. Secondly, I found that there were some things I had to do (and some I shouldn't do) in order to effectively communicate with my doctor. 1. No matter how frustrated you are or how many doctors it took to get to this one, give this doctor the benefit of the doubt and use graceful speech when addressing the doctor.  Getting upset right out of the gate (or in this case, examining table), is likely to cause any human being's feathers to ruffle. 2. Be respectful of his/her years of training and experience.  Speak respectfully to the doctor, even if you disagree.  The more respectful you are to him/her, the more he/she will be to you and the more credence he will give to your ideas. 3. Be courteous, but don't take "I dunno" for an answer.  If you don't get the answer you want from your doctor, you can calmly and respectfully suggest the research you found and remedies you'd like to try.  Or tests you'd like to have done.  Doctors are busy folk.  They may not know of the latest research, but if you throw it in their face, they may feel like you are calling them incompetent.   If you don't press to find the right treatment, you may live with the same silly maladies for 30yrs! 4. Bring a list of symptoms and questions with you so you don't forget what to tell or ask the doctor.  Now take care here, because doctors can get intimidated by "The List."  I usually say that I have a list because I'm so tired I can never keep everything straight.  That helps to put the doctor at ease that I'm not there to grill him.  lol I actually wrote about how to talk to your doctor in one of my studies for adults called Say What You Mean Every Day.  I am planning to write a complete book about my experience with doctors and how to talk to them more effectively sometime in the not too distant future.  The working title is, So THIS is What it Feels like to be Normal! What's your story?  What have you experienced?  How have you discussed your treatment with your doctor?  How have you handled any disagreements?  Share!


  • cindy holman

    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!

  • jojosblog

    I think the threat of malpractice suits actually hinder so many diagnoses.

  • Carla

    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!!!

  • jojosblog

    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.

  • Tamara Walker

    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.

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