Sunday, July 6, 2014

Misunderstanding the Difference Between Giving Up and Accepting Life With Chronic Pain, Part 2

A few days back I did a post about how medical professionals may misunderstand the difference between a patient who has given up and a patient who has learned to accept that medicine can't yet cure us of our chronic ailments. By the end of the post I had only posed the question - "how do we get them to understand?" - and have since been thinking about it.

Trust me - I'm the patient.
This is my life. This is my body.
Trying to educate a professional about something related to their profession when you don't have the training and experience they have is tricky business. Of course, that doesn't mean you don't have something of value to teach them, but convincing them of this is an uphill battle. I think that hill is even steeper when you present as someone in chronic pain. We often come with all sorts of unwarranted labels (pill seekers, fakers, attention seekers, weak, hypochondriac) not to mention some think our ailments are all in our heads or that the conditions don't exist  (fibromyalgia, chronic fatigue, etc.).

Imagine walking into a doctor's office. A nurse takes your history and then the doc arrives and does his or her I'm-a-god routine of making assumptions, asking a few questions, rushing to judgment and then giving you the old brush off. Maybe it's a comment like, "Have you seen a psychiatrist?" or "I'm not going to prescribe you any narcotics." even though you never asked and it never crossed your mind. The brush off can come in many forms, no doubt you have been experienced it in at least one form if you live with chronic pain.

I've come to believe that there is nothing we, as patients, can do to impact the beliefs and behaviors of professionals like this. What we need to do is find are practitioners who at least believe our conditions exist. That should be the bare minimum we demand. Beyond that, hopefully we can find practitioners who are willing to form a partnership with us. I believe it is only with this type of professional, we have a chance at sharing our experience in a meaningful way.

My hypothesis is: If we can find a way to
     1.Shine a light on the possible assumption
     2. Show that we understand how it may look
     3. Explain why it is not true
then we might have a chance to influence the possible assumption. Assuming you are sitting in front of an open minded, partner-oriented doc.

With all of my future appointments I am going to start saying the words - "I'm not giving up but I'm done trying every variation of possible preventative pills. Instead_______" This is where I'll fill them in on my plan to tackle the chronic pain component in order to better manage my symptoms and increase my quality of life. I'm just going to be clear about what I'm doing and why. If they want to get on board and help me-great. If not then the search will continue. I am done wasting time with docs who are not interested in partnering with me.

I don't care if it takes 5 years to find the right person. I will find them. I won't settle. Fortunately, I live in a large metropolitan area so there are a whole lot of docs to try. In the meantime, I know I can manage on my own. I've made it this far, haven't I?

1 comment:

  1. It's so important to advocate for your medical needs. It's so upsetting when we're profiled as drug seekers or seen in an unkind light. Good for you for keeping up with the search for a good doc.

    I understand on one level why docs find us frustrating. My sense is that most of them like to solve puzzles (proper diagnosis and treatment = success) and we are puzzles not easily solved. But you would think that might make them even *more* interested, not less. A lot of the time they are projecting their own frustration onto us - and that is not okay.