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?
Wow. You have helped me immensely as I deal with the ebb and flow a chronic disease presently diagnosed as asthma but still not under control
(could it be something else as all these meds aren’t fixing the problem). Nonetheless I don’t want life to come to a stand still because of this.
Thanks.
I generally think of myself as having chronic illnesses rather than disabilities. Part of it is probably my own stubbornness — I want to do everything myself.
I think you are right, though, that disability is a more public concept. The only time I have really referred to my illnesses as disabilities has been when I have needed to organize assistance or special considerations, i.e. writing school exams on the computer instead of by hand.
I’m a young adult cancer patient, author, and blogger. I have been living with my disease for nine years with no remission. It has only been within the last year that I have begun to see it as a chronic illness.
What took me so long? I believe it is the language that we use in the cancer culture to describe our illness. Sure, policy papers describe it as a chronic condition. But in the world of support groups, t-shirt slogans, and wrist bands, we hear that cancer is a battle. I agree with what an interviewee said in my book: He didn’t like the battle metaphor because it contributes to the illusion that you fight a big battle and come out either a winner or a loser. In reality cancer is so much more complex, and if you survive the side effects of treatment are more lingering, than any fight that can be over and done with in a singular acute attack.
I have blogged about whether cancer patients consider themselves to be disabled. I am shocked at the responses that show how biased many cancer patients are against disabled people. Patients who are significantly disabled scoff at the term refusing to use it as a label – to the point where they do not utilize services available to them – because they see being disabled as “giving up”. They refer to it in loser terms. I don’t think they have any idea how offensive their line of thinking is to others who are disabled from different diseases.
Great post Laurie. Thanks for getting me thinking about this topic again. And hope your vacation had some good relaxation mixed in with work.
Best,
Kairol
blog – http://everythingchangesbook.com/
Thanks for commenting on the public aspect of these terms, Helen–it’s something I continue to mull over.
Kairol, what a coincidence your comment’s content was for me–just this morning, I was working on a piece about metaphors and thinking about our interview.
And yes, vacation was lovely! Was doing an online instructional course (bad timing) so spent every morning logged on doing training, but by noon I clocked out! 🙂 Best of both worlds, I guess, but would prefer more distinct boundaries sometimes.
It’s true that chronic illness and disability have much in common in terms of goals. Still, I find that at least where I live “disability” seems to mostly cover major mobility impairment (wheelchair), deafness and blindness.
I am disabled by the legal definition (mu chronic illness significantly interferes with activities for daily living). In am in the UK, where all disabilities are declared before job interviews. At a recent interview, I was offered a list of accommodations – extra light, wheelchair-accessible room, hearing loop. But it turned out that accommodations that I needed were more difficult to get – e.g. cost of the taxi because I cannot handle the distance between a bus stop and train station while carrying an overnight bag; cost of a B&B room in a place which offers either ground floor rooms or an elevator (because their hotel allowance was enough only for cheapest places which did not have any disability accommodation.
Were those reasonable allowances? Hard to say, but I was certainly left feeling that somehow labeling myself as disabled didn’t really help.
There’s a huge social stigma to using the word disability. People in wheelchairs are “mobility-challenged” and such like that. Disabled? That’s got to be someone MUCH worse off than I am, right? No matter how badly off I am …
My chronic illness, which remains undiagnosed although I seem to keep picking up secondary diagnoses along the way, varies so greatly that what I can do one day can be entirely different from what I’m capable of the next.
I definitely meet the criteria Mary mentions: my chronic illnesses significantly interferes with activities for daily living. But am I disabled? People who glare at me when I get out of my car in a handicapped parking spot sure don’t think so. People who see me at my daughter’s preschool on the rare occasion I make it there have no idea I have anything wrong with me other than a weight problem.
And yet I have to plan my activities carefully because the days I take a shower, I usually can’t do much else. It kills me that I was the only new mom I knew who managed a shower Every Single Day during my daughter’s very clingy, colicky phase (which lasted about six months!), and now some days I can’t manage it even if I do absolutely nothing else.
I worry about whether I’m safe behind the wheel, and yet, if I’m not, how will I get to the various doctor appointments that I always seem to be making the rounds between in the hopes that one of them will have a eureka moment and figure out what’s wrong with me, or at least how to help me feel better and be more functional.
But I can dress myself (on the days I get dressed, which is pretty much only if I’m seeing a doctor or we’re having company). Feed myself (even if I can’t cook most days). Use the bathroom by myself. Bathe myself. As I understand it, because I can do all those things without help and am safe to be home alone without supervision, I can’t check the little box on my IRS form claiming to be disabled. Which just boggles my mind, but I have to agree that people who can’t do any of those things for themselves definitely qualify as disabled.
But because I’m not disabled by IRS standards, and I neither work fulltime (which I can’t because of my illness) nor go to school fulltime, we can’t deduct the cost of the daycare we need for our daughter, which is an expense we only had once I got so sick, which just doesn’t feel fair. But I guess no one ever said that life (or taxes!) were fair!
Eep. I’ve written a major vent here. Sorry about that, Laurie. But you got me thinking after I read your blog post. Wish I’d seen it before I answered that question in your email! 😉
Interesting topic. I’ve certainly never considered myself disabled, and I am even hesitant to mention my chronic illness to most people unless it comes up directly (“Wow, that’s quite a cough you’ve got there!” “Are you sick?” “You always seem to be sick!”) and I feel that explaining my condition would be easier than being evasive. Honestly, I feel like people judge others when they hear that they have chronic illnesses (perhaps the same is true for disabilities, especially those that are not obvious and visible). I think one thing that probably connects disabled and chronically ill patients is the feeling of difference and being outside of the mainstream. But I haven’t really interacted much with disabled people, so I can’t say for sure. Anyway, I’m so happy to hear about your improved health after the hellish winter you described in an earlier post!
Talking about semantics…
the phrase “chronic illness” is seen as an oxymoron in biomedical discourse which sees disease and illness as acute deviations from a “normal” well-being.
Not surprising it’s such a poorly recognized, acnkowledged, or understood term, publicly, when its whole concept is anathema to western medical conceptions of health and illness.
(steps off soap-box)
Oh wow, this was really interesting. When I think about it, I usually say someone is disabled if they are not able to do something physically. I consider for example autism to be an illness, not a disability.
Best regards, Lorne.
It is a nice article of Illness vs Disability. Disability insurance is also called income replacement insurance. A learning disability is something you have always had a brain damage and mental illness is something you acquire.
Thank you so much for this post – very informative, and thought-provoking. I always have a hard time describing the subtleties differentiating chronic illness versus disability to those who aren’t ailed by either. The bottom line is – both are disabling. Real strives are being made toward making a more accessible world around us, but I love that you touched on one of the biggest and most difficult things to change: respect. With all the tribulations that come along with disabilities, I’m fortunate that I have Individual Disability Insurance to cover the financial aspect. More strives to be made, certainly. Healthcare reform – perhaps a step in the right direction?
I have what I consider to be a chronic illness. However, my husband and my mother want me to register for disability because of work. I get sick more often than others, have quite a few more doctors appointments, and some-days simply can’t make it out of bed. I have been pushing my health to the back-burner because I am still new at my job and on “probation”. I’m worried that if I miss too much work or talk to them about my illness, I will lose my job. I have always been one to do things on my own, but I cannot afford to lose my job. I wonder whether to enlist with disability or to keep pushing through. I think that labeling myself “disabled” is what I am worried about because I don’t see myself that way.