So, this post was percolating well before I was on vacation, but I’m glad I held off on committing it to the screen until now. My vacation was actually a pretty good complement to a line of thought that first began when I met up with Joe Wright of the wonderful blog, Hemodynamics—his posts are always so intelligent and insightful, and I knew speaking with him in person would not disappoint.
As with all good conversations, ours moved from an original specific topic and wandered towards something bigger and completely unscripted: chronic illness and disability, and the disability movement.
Now, if you’ve read this post on illness versus disease or the follow-up on language and the patient experience, you know how interested I am in the semantics of illness. Accordingly, I find the intersection of illness and disability pretty interesting, too.
For a start, people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness.
And if you’re wondering what vacation has to do with this, I’m getting there. While this summer’s vacation was more of a “working vacation” than years past, it was also one of the best ones. Unlike previous August trips, I didn’t have heart monitors or blood pressure cuffs with me. I had adrenaline, and therefore didn’t have to deal with the side effects of solumedrol infusions, and since I didn’t have an active respiratory infection I wasn’t chained to my nebulizer.
Instead, I took walks and brought my dogs swimming and had dinner on the beach and generally had a blast (work aside). My legs worked, my wheezes were dull, and my energy was good.
And in comparing the relative normalcy of our vacation to the chaos I am used to, I couldn’t help thinking about the ebb and flow of chronic illness, how sometimes the body can be cooperative and yielding while others times the symptoms take over so many aspects of daily life.
So for people whose chronic illnesses cause disabling symptoms, how does that boundary crossing work? Going back to the decisions we make when choosing terms to describe illness, when are you more likely to use the term “disability” versus “chronic illness?” Is it a semantic distinction of little significance to you, or is the former more difficult to adjust to or use? (And if so, why?)
I wonder if the choice to use “disability” is more tied up with receiving needed accommodations or services—a more public term—while chronic illness is a more private understanding of the ebb and flow of invisible illness outsiders might not get.
The other connection I’m just starting to tease out (expect more later) is that between the disability movement and patient advocacy in regard to chronic illness. Believe me, I am by no means an expert on the history of the twentieth-century disability movement (I am wading through a lot of articles, though, and am happy for any suggested resources). But from a macro perspective, and doing some major summary here, a lot of disparate patient populations eventually came together under shared goals: respect, employment, accessibility, etc.
Despite the fact that many patients with chronic illness also fit under the umbrella of disability, I do believe distinct differences remain. Reading other blogs and discussion forums, I am often amazed at the sheer variety of chronic conditions out there, by the way some non life-threatening conditions can be really incapacitating, some life-threatening conditions can have the appearance of relative functionality, and how quickly things can change for people. As patients, those with chronic illness have so many different needs and challenges.
So what are the shared goals of the chronically ill, and the catalyst that unites different disease groups and patient populations? Is it health care reform?
I’ve still got a lot of thinking and reading to do. Your thoughts?