I’ve said that I plan to write a book just about my experiences with this medical mystery illness, this blog is part of that process. But that’s not what this post is about.
I have another plan I am thinking more and more about for writing a book. I want to write something aimed at health professionals that seeks to bridge the gap between knowledge those with chronic illnesses have and share and that which professionals in the field have. I have one foot on each side as someone living with severe, chronic illnesses, and also as a social worker working in mental healthcare/integrated healthcare.
From my experience with both I find myself often frustrated with other health professionals who may be well educated on diagnostic criteria, treatments, services available, but do not understand how it feels to live with one of these chronic illnesses.
While there are limitations and downsides trying to work when dealing with severe chronic illnesses, I have found in my work that my experience living with chronic illnesses provides me advantages in my work. I understand how it feels in a way others don’t and sometimes the problem solving I’ve had to do for myself means I know about more options than others who are often trained in one size fits all solutions for chronically ill individuals.
Of course the more I think about doing this the more I realize what a massive undertaking it will be, to be truly comprehensive and to merge empirical research, theory, and also personal experience.
Also one idea I’m playing with is to see about trying to find folks with other chronic illnesses or disabilities write short essays about their experiences with different aspects of it, in order to provide a more diverse aspect of personal experience in it, rather than relying only on my own which is obviously much more limited.