Thursday, November 5, 2015

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

I wanted to repost this entry from July 2, 2014. This misunderstanding remains on my mind and certainly remains an issue when dealing with medical professionals.

Misunderstand the Difference Between Giving Up and Accepting Life With Chronic Pain

A few years back (2010) I spent several months going to a physical therapist in an effort to better control my pain. I wrote about it atime or two or three. All this time has passed but I still think about something she had said. Here's what happened:

I had been trying to explain to her just how debilitating the migraines and my other physical issues were (I already had fibromyalgia but this was before I got the diagnosis). I told her how much I missed working and how not being able to was both financially and psychologically challenging. I told her that hubby and I were considering having me apply for disability.

Her response was to tell me that the patients she sees who are on disability are all people who have given up and she didn't think I was a quitter.

I was pretty surprised by this response and didn't even know what to say at the time but I did think about it a great deal. In fact, I still think about it. What she said disturbed me.

1.  It sort of felt like a backhanded compliment. On the one hand she was sort of praising me for what she deemed a determined spirit but on the other hand she was also being sort of manipulative in saying "you don't want to be like these quitters on disability do you?"

2.  I find it impossible to believe all her patients on disability have given up and she didn't give me any examples of what made her think this. The fact that these people are seeking help from her to improve or manage their symptoms indicates to me they have NOT given up.

3.  Being a healthcare profession with extensive education and experience, her opinion could impact the quality of the care she provides to people on disability, potentially the care they receive from other professionals who are part of their team (assuming they communicate), and also could impact the future disability renewal process of these patients.

I can't help but think she must have been misinterpreting what she was seeing in these patients. Back then, despite being in chronic pain for several years, I was still behaving and speaking like someone in acute pain. My brain could acknowledge I was in chronic pain but I was still trying to figure out what went wrong so I could fix and get my life back. I was still desperate and willing to try anything. I was still wasting a tremendous amount of energy and time on finding a cure instead of trying to figure out how to manage my symptoms and do the best I can despite my chronic pain. Don't get me wrong, I was certainly trying to live my best life at the time but that wasn't my primary focus.

Only after coming to the realization that years of trying anything and everything hadn't made a meaningful
improvement in my conditions or my ability to function that I really start to focus on improving my quality of life. I started approaching my medical appointments with more intention and purpose. I started being more thoughtful and discerning about the treatments I was receiving. I started accepting the fact that I was living with chronic pain. I stopped looking to the doctors for a cure.

Maybe this is what my physical therapist was seeing. Maybe the patients she spoke about weren't as slow to come to this realization as I was. Maybe they were already focused on pain management instead of the futile search for a cure. I can see how this might be viewed as giving up to someone who doesn't understand how chronic pain works. But shouldn't someone in her line of work understand this? Shouldn't all health care professionals understand this?

This is NOT giving up. How do we communicate the difference between giving up and accepting that traditional medicine can't cure us  - especially to those who practice medicine?  I would like to explore this more but maybe another day. Right now I just need to lie down.

1 comment:

  1. I am disability. I have NOT given up. I have ACCEPTED that traditional medicine will not cure me. I also know my limits. I have gotten to the point where I can work very part time and it is acceptable with disability (we are talking 5 hours a week here). I don't know how to communicate the difference either. It is hard for someone who hasn't been in our shoes to understand.