So, while it’s important for you to work on your medical communication skills, and it’s important for you to know when to see your doctor, and it’s important to ask your doctor about alternative options, it takes two willing participants to create a partnership.
Sometimes, the doctor is the problem
I generally try to give people the benefit of the doubt, but I’ve also learned the hard way that, just like any other profession, each doctor has their own experiences, perspectives, biases, and self-expression.
Not all doctors are created equal – some simply aren’t great at their job, or for whatever reason can’t communicate well with you.
Another piece of your responsibility for partnering with a doctor is recognizing when you and that doctor are simply incompatible, whatever the reason.
If you and a particular doctor cannot work together, then it’s time to replace them.
Note that I’m not suggesting you leave your doctor because you don’t like their diagnosis, or because you are frustrated that you haven’t been diagnosed yet.
The question you need to ask yourself are more along the lines of: Do I trust my doctor? Have their statements made sense? Do they listen to me and respect my experience?
If the answer to these questions is yes, then likely you need to give things more time or see if they have a different sort of specialist to refer you to.
You deserve a competent doctor who will work with you, not work on you.
Examples of doctors being the problem
- I saw a psychiatrist who insisted on medicating every symptom I mentioned.
- He stacked my medication, treating the sides effects with more meds
- I developed tardive dyskinesia, which is a side effect from a medication I never should have been given!
- The treatment he suggested for the tardive dyskinesia would have made the condition permanent.
- Solution: My neurologist helped me taper off the medication, eventually ending the tardive dyskinesia symptoms. I also never returned to that doctor.
- I saw a urogynecologist who insisted that I had interstitial cystitis,
- She insisted on a ‘less invasive’ test than the standard
- That test focused on describing the severity of my bladder pain under different circumstances
- Her nurse insisted that I was in more pain than I had reported, and recorded different values from what I told her
- turns out that she and several staff members all shared that diagnosis
- Solution: I went to a urologist for a second opinion and was properly tested(using an endoscope) There was no evidence that I had ever had IC.
- I saw a fertility focused endocrinologist because I had near-constant vaginal bleeding and spotting for over a year.
- He assumed I had come in for help getting pregnant
- He insisted on testing that I couldn’t physically handle
- When taking estrogen orally set off my FND symptoms, he ordered me to take it vaginally
- Solution: I recognized the futility of seeing him, then played with birth control options with my OBGYN until my periods shifted back into more regular patterns.
- Al saw an endocrinologist for his low bone mineral density
- She performed a variety of tests, and tested multiple theories(a very good sign)
- when the test results didn’t identify a cause, she gave up and suggested that his density had always been low(she wasn’t the right doctor for Al, but may be worth a visit in other cases)
- Solution: we went on to a new endocrinologist that was better able to help him.
Examples of doctors who aren’t the problem
My sisters had this incredibly bad cough when they were in middle school. Their pediatrician wasn’t sure what was happening and referred them to a tropical disease specialist, who immediately recognized the cough as whooping cough(pertussis) and was able to advise on treatment and management.
The pediatrician was competent enough to recognize his own weaknesses, and refer my sisters to a useful specialist.
My first neurologist, Dr. Mazzoni, was able to diagnose me with conversion disorder(the appropriate name at the time), but admitted that there wasn’t a whole lot to be done treatment-wise since there wasn’t much of anything proven to help manage FND.
His ability to diagnose me and his honesty on the lack of treatment options allowed me to deeply trust him and saw him for about 11 years.
He and I would meet every 3-9 months or so, depending on the life situation, and discuss what my symptoms were and if he had any thoughts on ways to help manage my symptoms.
He saved me from developing tardive dyskinesia with good advice, and we experimented with using antidepressants and clonazepam to help me manage my symptoms.
He was very positive about how I managed my symptoms and life, and when he informed me that he was moving, referred me to Dr. Schneider, my current neurologist, who is also excellent.
Also, I have found a cadre of experts in their own field who openly recognizes their lack of knowledge on FND. This works because they believe me and listen to my explanations, and are able to work with me in walking that line between testing too much and assuming everything is FND.
Seeing the opthamologist
When my eyes started darting around in my head, I went to the ophthalmologist, who had seen me symptomatic every eye exam for years, and had been very understanding about my need for the occasional ‘twitch break'(control release where my symptoms came out).
He gave me a thorough exam when I came to him with the eye movements and my concern about my eyes being out of focus, In his exam, he could see no physical problems with my eyes, and nothing to indicate any other neurological issues that he would recognize.
So, I was comforted that my eye issues weren’t a more standard problem, but instead were an FND symptom.
These were the keys to my trusting him. He
- accepted the weird symptom that I expressed(believed me)
- respect that it might be an FND symptom(acknowledged a possible cause)
- examined me to look for signs of a different problem(double-checked)
- affirmed that the very real symptoms did not seem to have another cause
Recently, my teeth started hurting whenever I ate or drank, more strongly the more extreme the temperature of the food or water was.
I was able to see my dentist the first day his office was open(this started, of course, on a Friday night), and he examined me and was able to confirm that there was no damage to my teeth or gums that would have caused this.
He commented that over the years he had had multiple patients come in with this particular issue, and it always appeared to be a random neurological glitch that seemed to sort itself out in a week or two.
They believed me and saw my symptoms, asked appropriate questions, and used their skill set to see if my symptoms matched any issues they were familiar with.
Al had severely low bone mineral density, and the first endocrinologist he saw could not think of any more conditions to test for. While she was a good doctor overall, she hit a wall with Al’s case, and could not help him.
The second endocrinologist Al saw thought of additional tests, and refused to stop until she could learn what caused Al’s osteoporosis. His issues were a puzzle to solve, and after more digging, she eventually realized that Al had very low B-12 levels.
Once she identified this possible problem, she referred him to a hematologist, the appropriate specialist for pernicious anemia, the blood disorder that she (correctly) suspected he had. If she hadn’t done that testing, Al and I would never have thought of consulting a hematologist.
Doctors recognizing their own limits or ignorance is comforting and uncommon.
These situations, where the doctors work comfortably within their own limits while respecting the information you share is very important for you to be able to work with them.
You don’t want to see doctors be so insistent on their concepts that they will choose to dismiss information you tell them, and possibly information shown in test results.
Conclusion: Sometimes you start with the wrong doctor
While there are a lot of things you may need to do to improve your communication with your doctor, sometimes no matter what you do, you will still have additional challenges because of the doctor’s personality or skill(or lack thereof).
It’s important for you to consider this possibility when you see a new doctor(or after some time with a doctor that doesn’t seem to be helping you).
While leaving a doctor because they haven’t given you a diagnosis you want or a medication you would prefer may be counterproductive, you can and should make sure that you are seeing a doctor who can and will help you appropriately.
You want a doctor who listens to you, and who believes what you tell them, even if it seems weird. You are the expert in your body, so they need to listen to you.
If your doctor insists on a diagnosis despite evidence against it, or doesn’t respect your personal boundaries, this is a good time to replace them.
Instead, you want a doctor who will be honest with you and give you a complete picture of your situation.
You want a doctor who is willing to admit to a mistake, and who will persistently look for solutions or additional options for you.
To keep yourself safe, make sure that you are communicating clearly with your doctor, and that your doctor is listening carefully to what you have to say.