A reader Lissy recently asked this question about getting the best treatment from your physician and being an advocate for your own care.

I’d like to see the topic of being an advocate for yourself with the healthcare community discussed.  I’ve found it increasingly frustrating trying to manage my own care due to lack of continuity and communication among my physicians.  I’m always double-checking to make sure they have the right medications for me and are looking at my whole health picture when treating me.  I have a rare genetic disorder, so my medication and treatment options are limited due to this.  Even though I’ve already told my pain management physician and neurosurgeon, I feel like I have to constantly remind them.

I asked “B” to respond, as I feel she does an excellent job of handling these challenges.  “B” writes:

I’ve been dealing with chronic back pain and sciatica for over 10 years.  For most of that time, I believed that there was a “cure” or a way to “fix” my problem.  As you know with chronic pain, it has cycles where it gets worse for a while, then might be a bit better for a while – but eventually it gets bad again.  During the ‘good times’ I would try to just live with it – stop seeing doctors, manage my meds on my own.  (I am fortunate to have a physician-husband who could serve as an interim prescriber of medication.)  But then I’d hit some ‘bad times’ and realize that I needed to do something.  So I’d go in search of a new approach to get ‘fixed’ – either through traditional Western medicine (narcotics, P/T, injections, surgery, etc.), or alternative treatments (acupuncture, therapeutic massage, yoga, pilates, Feldencreis, Fenzian treatment, etc.).  Some of them helped for a while, but nothing provided long-term relief. 

Then about 2 years ago, I was ready to give up.  I was going down hill but didn’t know where to go.  I began working with a new doctor who introduced the concept that chronic pain is a disease in and of itself, and that there is no way to ‘fix’ my pain.  Wow – what a new concept that was to me … a total paradigm shift!  At first, very depressing … no fix!!  But then I began reading more about chronic pain.  I learned that there are two aspects to pain like mine.  First, there is a “mechanical” part, in which a disk presses on my sciatic nerve, creating pain.  Second is a “nerve/brain” part, in which the ‘pain system’ in my body is out of whack and sends out pain signals inappropriately.  In both cases, the pain is real.  And the good news is that for each, there is treatment … and this gave me hope!

Given the complexity of chronic pain, it’s not surprising that no one doctor can be an expert in all aspects of this disease.  So over time and with some luck, I found it most successful to have a ‘pain team’ comprised of physicians who have different specialties and expertise.  I have a Physiatrist, who is my ‘primary care pain doc’ – she does all of my prescribing, and serves as my overseer.  Then I have a Psychiatrist, who is an expert in pain – he provides consultations on my medications, and provides a holistic approach to pain management, making changes in my shoes, my mattress, my chairs, the way I ride in a car, the way I stand, walk, sit and move.  And I have a second Psychiatrist who provides treatment to the “nerve/brain” pain system – she teaches meditation, breathing, guided imagery, and exercises to re-train the body to reduce the ‘non-mechanical’ source of pain.

There are several keys to making this team approach work:

1. They all know about each other, and know that I want them to work together.
2. They don’t make me feel like they resent the fact that I have more than one caretaker.
3. They understand their own ‘role’ and each other’s ‘roles’ in my care.
4. They all accept that chronic pain has both a ‘mechanical’ and ‘non-mechanical’ aspect.
5. I still ‘own’ responsibility for making sure that I’m getting what I need.

While all of these points are critical, the most important point here is the last – it’s my disease, and I have to make sure that I’m getting what I need from each member of my team.  This would not work if the members of the team didn’t work together.  Like an orchestra – they may each be responsible to play an instrument – but I’m the one who has to conduct them.  I have to keep them apprised of my status – what’s working, what’s not.  I may have to remind them of what we’ve tried in the past, and whether or not it worked.  I have to coordinate communications between them either by serving as the messenger myself, or by coordinating contact between them.  I have to ensure that there’s a plan, that I know what that plan is, and I stay on top of getting that plan implemented.

Although we as patients may not be medically trained, we are frequently the expert in our disease.  We can’t forget that.  We have to integrate our knowledge of ourselves and our history with the medical and research knowledge that the physicians provide.  We have to be our own advocate.

Thanks so much to “B” for addressing this question and sharing some wonderful – and maybe hard-won – wisdom.  Readers, what have you found to be helpful in being an advocate for yourself?

Grand Rounds, a weekly medical blog carnival, is posted this week at Colorado Health Insurance Insider.