The Art and Skill of Useful Interactions
Having ALS necessitates having conversations about some potentially touchy subjects and there is both an art and a skill to having these conversations well. I am probably primed to be critical of some folks’ ability in this department because of my professional history as a therapist and a social media consultant with a sub-specialty in health. I take great care to interact with empathy and relevance on the health oriented discussion boards I’m on. I’ve heard first hand accounts of unsympathetic, or worse, dismissive medical professionals and I don’t want to burden other members with more of that kind of useless experience. I’ve also been contracted to research a model of medical care called patient centered care and I have a hard time not cringing when medical professionals aren’t at least trying to implement its principles. In short, I have high expectations of myself and others and I’m not particularly apologetic about that.
And so it is through that lens that I view my own experiences with ALS professionals. Right from the start there seemed to be a disconnect between how I was presenting and how some professionals were treating me. I had hope and an incurable sense of self-efficacy. Despite this, one of my neurologist’s first suggestions was that I meet with a social worker. Turns out he did not meet with me so he could get to know me or how his organization might support me on my journey to live well with this disease. Rather, he wanted to be able to check off his list that he had told me about SSI, his organization’s services and to give me a stack of marketing materials that were so useless that they ended up in the trash.
His message was far from hopeful. There were no discussions of how to maintain a sense of value and usefulness-qualities constantly at risk due to diminishing physical abilities-by, say, supporting my continued employment; instead I was directed to SSI. He had no suggestions for a trustworthy resource for stair climbing equipment to help ease the work of getting up and down my home’s stairs because he thought it was better if people just moved to a one story home. This ALS-bound belief of his was completely out of touch with the reality of the benefits of my current home which included living near irreplaceable neighbors, the built-in babysitting of the gaggle of kids that play like siblings whenever school is out and that we can retrofit a downstairs space into a main bedroom in the future if we like. His lack of artfulness in having these conversations could have led me down the wrong paths if I didn’t find the strength to listen to my own instincts.
Ultimately, that has been one of the gifts of this disease: a renewed ability to listen to my own instincts. I feel less bound to social norms and more committed to honesty and genuineness even when the truth causes discomfort. I’m not uncomfortable with others’ discomfort; I’ve got bigger things to worry about.
But, as critical as I am, I have empathy too. I recently read this post by a blogging doctor titled A Letter to Patients With Chronic Disease. It exposes the perspective of medical providers whose genuine desire to be helpful may be thwarted by the fact that there is no known cure for a disease. It reminds me that providers have human reactions to big diseases too. I will be wrestling with one piece of advice he offers:
Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
I suspect there is a better balance I could strike between coming on too strong and not strong enough. In my defense, my intensity is highly related to the fact that I often feel I am swimming against the current. I am expected to be hopeless, dependent and in need of education, but if you’ve ever met me, you know how far off these descriptors are for me. So how do I push against those assumptions without coming on too strong?
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A Path to Health 