Who's in charge? Part Two

Who's in charge when I don't agree with my Doctor or my options?

The easiest answer would be, you are.  You're the person in charge of your own destiny, whether it be medical or otherwise. 

Where to start depends on a lot of other considerations.  Number one is, what exactly are you in disagreement about?  If it's an opinion regarding specific care or treatment, it can usually be resolved by getting other opinions.   Also, doing research on the success and failure rates for a particular treatment may help convince those with opposing opinions.

If you still can't resolve the issues, then I'd consider checking into support groups.  A lot of patients become a part of these support groups because they've stood in your shoes, filled with the same confusion and mistrust.  That no one can understand what it's like from your prospective.  But, you'd be wrong.  There are lots of people whose life story so eerily resembles your own, you'd be shocked that it's not your own.

Try not to wage a personal campaign against your Doctor.  Even in this day and era, there are still many things Doctor's don't fully understand.

In my own personal experience, I've had to explain my medical condition, it's symptoms, effects, and standard treatments so often that I find it strange when I don't have to.  My PCP didn't quite understand the complications and intricacies of my pain condition.  It's a very complex and complicated disease, affecting each person a bit differently, although most symptoms are similar.

For instance, my condition make me very susceptible to changes in the barometric pressure.  Increases cause my skin to feel as though I'm in a vise grip; like wearing a wetsuit that's 5 sizes too small!  Decreases cause my skin to feel too loose.  As though I'm melting into a puddle.  Either way, they make the pain of my condition overwhelming, yet there is nothing that can be done to treat it.

My biggest frustration was getting my PCP to understand that this affected so much more in my life.  More pain means less ability to move and reduced desire to do anything, including basic care.  I don't like taking pain medications, and I try to limit them to the minimum needed to get me through the day.  I don't want to become another statistical pain patient that becomes a drug addict.  I know that sounds harsh, but it is too often too true.  Abuse of pain killers is becoming the fastest addictive substance out there.  But that's for another blog.  I don't want to become one of those statistics, so I limit my pain medications.  I try to minimize my medications as best I can, but there are some days I can't fight the good fight.  This is where the PCP and I come to a great divide of opinions.

That is, until five (5) years later, when he was diagnosed with the exact same condition as mine.  Now he has an entirely different opinion about how I choose to control my pain.

Of course, we can't all be that fortunate.  It's not very likely your Doctor will suddenly understand you or your disease fully, or experience your life as you live it from one day to the next.  Nor is it likely you'll have my luck and find a Doctor with your exact condition to treat you.

There are Doctors who specialize in care for specific conditions.  A quick search on the Internet will guide you toward them.  But sometimes it's not possible to get to a Doctor who specializes in the particular field you need.  So, spend time talking with your contacts from the support groups.  Print out articles that you find for your Doctor.  Help to educate them as best you can.

Also, you can contact your Insurance Company and/or Physician's Group for referrals to other Doctors, Specialists, etc., to help manage your condition.  Additionally, there is always the health care advocacy groups.  They ask lots of questions and delve deep into your health records, but they can be very knowledgeable and helpful.

The best course of action may be just to change your PCP or Doctor.  But, you're very likely to find yourself in the same predicament.  My experience has often shown that you can learn more with a clear mind and a calm demeanor.  Try to understand why your Doctor wants you to follow a particular path of treatment or care.  Try placing yourself into their care and give their opinions and suggestions at least a minimal try.   Then, at least they can't say you are continually uncooperative or uninterested in any type of care or treatment.

Who knows, maybe they know something you don't, or hadn't considered.  Maybe they prefer you to start out slowly with baby steps and see how well you respond to the least invasive treatments, first.  Then they can gradually up the ante and move you toward more aggressive treatments.   This isn't necessarily a bad thing.  And while I know it seems like mostly wasted time.  I have discovered that Doctors can glean a lot of useful information from treatments that don't work, as well as those that do.  Perhaps, sometimes, even more from failures. 

It's the same with life.  You can't learn anything by being right all the time.  And so it is with health care.  A great deal of trial and error.  Sometimes the long way around may be what's best for you in the end.

But, only you can decide that for yourself.  You need to talk with your Doctor.  Make them understand your concerns and reservations.  Talk to them about your planned approach for care and treatment.  It's very possible that you can reach some sort of compromise that honors both opinions and covers an even broader spectrum of treatments and care.  Until you can be reasonable and speak plainly with information and research to back you up, then you're probably wasting both your time and efforts. 

Become as knowledgeable about your disease and/or illness as possible.  Education is vital to understanding what step comes next.  Until you're there, put your trust in your Doctor's care.  That is until they give you reason to not trust them.

When you have concerns or just don't understand, or are afraid --  talk to your Doctor!  Let them know all the things that bother you, that concern or worry you.  Because until you do, they are in the dark and without communication you're doomed to be frustrated and unhappy with any and all care you receive.   Communication with any Doctor about even the smallest concern can make a huge difference in your overall care.  But, until you voice them, the Doctor has no idea you're concerned or just worried.

So, find someone you feel comfortable with.  Try to follow their advice, but most importantly, talk to them about everything regarding your concerns and opinions.  Let them know how you feel about their suggested treatments, your worries, and options you'd like to consider.  Remember, letting them and yourself become a team will be the best form of treatment you'll ever receive!