When Someone Breaks Down Your "Positivity" Front

But I’m not mentally impaired!  My body is falling apart, but there’s nothing wrong with my brain, it works just fine – better, even than when I was healthy. I’m educated, I’m literate, I’m a writer – I’ve had my IQ tested and it’s way up there (not saying what it is, but I have the certificate to prove it) – how can you say the impact of these health issues has significant negative impact on my brain and my ability to function?

I felt broken all over again. I was in the middle of my appointment with a registered nurse who specializes in patient advocacy and dealing with disability applications. Specifically the final part of the application that deals with the assessment and impact of daily living with multiple severe chronic health issues.

I was devastated; embarrassed that she was focusing on all the negative aspects of things I just can’t do anymore; that take three times the effort and time, that take so much more determined focus and concentration to achieve. I’ve spent the last few years doggedly finding ways to compensate, to find ways to work through and around my disabilities, and to maintain a feeling of worthiness and positivity in my life even while my body has been against me every step of the way.  I kept feeling like I needed to redeem myself, that I had failed at something terribly important.  I couldn’t help myself; I broke down and cried.

This lady was just doing her job, and doing it extremely well – far too well for my comfort. It’s just that the hours we spent together going over every aspect of my current condition, drove home the fact that what I require to just get through each day has taken a huge toll on more than my physical body.  She explained (many times over) that the assessment has nothing to do with my IQ or ‘brain power’ – but that yes, my cognitive abilities, my ability to maintain the same level and quality of thought process, short-term memory, and even my speech has been affected by long term multiple chronic health issues. With years of extremely high pain levels, the physical disabilities themselves and the medications, how could they not be affected?

I finally understood what the nurse was telling me and how important it is to discuss and document aspects of my life that I’ve considered to be my own private challenges to learn to cope with and try to overcome— to face my situation head-on so that I can seek out the appropriate organizations to assist me now and in the future. But the whole process was far more stressful, humbling and invasive than I expected it to be. And it was terribly difficult to hold on to my pride; to my belief that I’ve been able to cope exceptionally well this past few years. I suddenly did not feel strong, or capable or productive, or useful to society— feelings that I fought so hard to deal with a couple of years ago when I was forced to give up my job because I just wasn’t able to manage working anymore. My wall of positivity came crumbling down this morning, and I felt lost.  I was grieving.

The next step is to go back to the doctor and ask her to clarify and add a few things left out of the medical portion of the application that would tie in with the assessment portion and make the whole application more cohesive; then I’ll make a copy for myself and send it, along with copies of supporting medical documents to the BC government. Hopefully my application for Provincial Disability will be accepted without my having to go through any further trauma.

In the meantime, I have recommendations to look into possible avenues for further home support and daily living aids that would help immensely if I qualify, and if I can obtain financial coverage or partial subsidies to cover the costs.  As for my pride and ego— they were severely bruised today, but I’ll work on reviving those … after I take another pain pill, some hot soothing tea, and have a long nap.

Julie Catherine / J C Edwards © 2013