Working with Medical Professionals (or You may have the M.D., doctor, but since it's my body, I'll make the final decisions.)

A doctor spends a lot of time in school, learning.  After they get through the classroom part, there's internship and residency, and depending on which specialty they choose, more time spent in residency and fellowship. There's a lot that goes into learning how to treat the various ailments and traumas that can happen to a human body and no one person can learn absolutely everything there is about medicine. 

This isn't to discount the amount of effort, time, and knowledge it takes to get those two letters behind one's name.  I have a huge amount of respect for those individuals who dedicate their lives to helping others, whether it's in medicine, social work, or a related profession.  But with any profession, there are always a few individuals who go into it for the wrong reasons (read: money).  And with medicine, there always seems to be a few docs out there who seem to suffer from "God Complexes" where they are unwilling to concede that they, in fact, may not know everything.  

When one is diagnosed with a chronic illness, it can become a full time job to coordinate doctor's appointments and medical procedures.  Fitting in a trip to the pharmacy before they close seems to happen more often than grabbing a quick cup of coffee with a friend.  

The receptionists at my primary doctor's office know me well.  They see me walk in the door and grab my paperwork without asking my name.  They ask about my husband and dog. They, like my close friends and family, have seen me "without my mask".  There's really no reason to pretend to be happy or healthy when you're going to the doctor's office.

My current primary care is awesome.  She respects my desire to try to treat my conditions as holistically as possible and understands that she is part of a medical team that I've chosen to help me, but that I make the final decisions on any sorts of medication and treatment.  I don't say that "I make the final decisions" to be a difficult patient; I say it because I have to live with the impact of those decisions.  

The average person--without any major illnesses--goes to the doctor when they get an acute illness like a cold or the flu, or maybe annually for a physically.  For an individual with chronic illness, there are frequent visits to the doctor's office (or doctors' offices, depending on the condition).  There may also be multiple medications for an individual to take.  And with those medications come side effects.  And some of these side effects aren't the most pleasant things to experience. 

I have been through multiple medications since my initial diagnosis of Fibromyalgia 22 years ago, and along with those medications, I've had to deal with side effects.  Some have been relatively minor, like dry mouth.  Others, such as the weight gain I mention in a previous post, haven't been so minor.  And still others, like the ulcer, have a potential to be very serious.

There are medications I prefer to not take unless it's absolutely necessary.  Like many people with chronic pain, I hold a "PRN" (or to take as needed) prescription for narcotic pain medications, but I avoid taking them unless I can't breathe, can't walk, or am in absolute screaming pain.  I think there's this idea that pain medication takes away pain, and in my experience, I still feel the pain.  I just don't care as much about it.  

But when I decide it's time to take a pain pill, I've committed myself to feeling rebound pain (and yes, that IS as fun as it's sounds), a pretty good headache, digestive challenges for the next couple of days, and just generally feeling like crud for a few days after taking it.

So, I've educated myself about the potential medications and treatment.  I ask lots of questions.  I've learned that while the internet can be a great tool with lots of information, WebMD can convince anyone they're dying.  I turn to peers on social media and online support groups for information and support.  I read journal articles.  

And while my primary care is awesome, amazing, and completely supportive of my participation in holistic therapies, I occasionally have to see specialists that aren't so awesome.

I've gone through multiple Rheumatologists.  For some reason, doctors in this specialty and I just don't seem to get along.  (They want to tell me what to do without questioning it and I like to question things.)  If I'm going to undergo a particular treatment, I need to know what the potential benefits/risks are to the treatment before I'll agree to it.  If it's adding an additional medication, I need to ensure that the new medication won't cause additional side effects that are highly problematic for me.  If it's a new medication, I also want to ensure that there aren't any contraindications with the medications I'm already taking.

I have had doctors tell me that all I needed was to "sleep and exercise more".  (At that point, if I could have done either, I wouldn't have had to see the new Rheumatologist.)  I have had doctors tell me that they didn't like treating people with Fibromyalgia.  (I was actually seeing this particular doctor for the recently added diagnoses of Lupus and RA).  And, as is my right as a patient, I fired both of those doctors from my medical team.

Here are some steps to be an active participant in your medical care:

• Educate Yourself.  Seek out information about your diagnosis and symptoms. Look up information about potential treatments for those diagnoses, and pay attention to the side effects in the fine print.  Find which doctors in your area/insurance plan are rated well, in terms of knowledge and patient care.  
• Ask Questions.  Ask questions of your doctor.  If they're not receptive to questions, they're likely not the appropriate doctor for you.  (And as a note, if you're seeing someone new or if you've received a new diagnosis, write any questions down prior to the appointment and bring your list with you.)
• Be clear about what outcomes you want.  Realistically, what you ultimately may want may not be attainable.  But what outcomes can you live with?  What's possible?  What can be done to get you from where you are closer to where you want to be?  
• Be clear about what side effects/outcomes are intolerable for you.  If increased fatigue is a problem for you, you likely don't want to be on a medication that will make you very tired.  If weight gain is a no-go, then you may want to avoid medications where weight gain is a side effect.
• Don't be afraid to request a change of provider.  Just like not all people get along with each other, not all doctors are meant to treat all patients.  Sometimes it's just a conflict of personality types, and it's within your rights to request a change of provider through your insurance carrier.  
• Don't be afraid to say no.  Ultimately, it's your body and therefore your decision on whether you move forward with certain treatment.  If you're not comfortable with it, it's your right to decline that particular treatment.

For more information, check out the Joint Commission on "Speaking Up".

Definitions of medical conditions listed in my chart.