Brain Drain: Chronic Illness as Disability by Anna Hamilton

The following excerpt is from a piece written by Anna Hamilton originally published in Disability Intersections on February 19, 2014. Thank you to Anna for allowing us to re-blog her article!!

Brain Drain: Chronic Illness as Disability

Anna Hamilton

Recently, the Tumblr blog Chronic Femmes–which positioned itself as a resource for chronically ill femmes–was the subject of controversy after one of its moderators answered a reader question by saying that it was important for people with chronic pain, chronic health issues, or mental health issues to not “[appropriate] disabled” when identifying themselves as chronically ill (along with some other problematic statements, such as one’s disability status only counts if that person can receive or currently receives public assistance because of their disability). Many Tumblr users with chronic pain and health issues took exception to this–although the moderator who wrote the response, Kendall, quickly apologized for her mistake, the incident itself demonstrates a common misconception about chronic pain and illnesses that feature chronic pain as a symptom–that neither are “really” disabling or debilitating.

If you don’t have chronic pain or have never experienced chronic illness, it can be hard to understand just how all-consuming pain–and related symptoms like overwhelming fatigue–can be. Writer Christine Miserandino penned a metaphorical essay, “The Spoon Theory,”in an attempt to explain to nondisabled people what it’s like to live with chronic pain and chronic illness; the essay has struck a chord with chronically ill people online, and “spoons” has become shorthand among many ill folks who find the term useful. But there are some situations where the spoon metaphor falls short–at least for me–and I’ve struggled before with communicating exactly how disabling chronic pain can be, and what it feels like, in talking to both nondisabled people and other people with disabilities.

Lots of people–especially nondisabled people–seem to not understand that chronic pain is ongoing, that it can actually be disabling, and, above all, that it can be beyond their understanding. I have heard people say that chronic pain, especially in young people, is “not a disability disability” and that people who claim to have chronic pain should just take some Advil and shut up (though not in those exact words).

I have been asked, “When you say you literally cannot get out of bed some days because of pain, what do you mean?” as if I can simply defer to a flow chart of some kind to make my experience easier for abled people to comprehend.

Read the entire post: http://disabilityintersections.com/2014/02/brain-drain-chronic-pain-as-a-disability/

 

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Anna Hamilton (nom de web Annaham) is a government employee, chronically ill person, and disability rights advocate by day.  A writer who has contributed articles, cartoons, and more to publications such as xoJane, Bitch Magazine, The Toast, and Global Comment, she is also the Managing Editor of Disability Intersections. She lives near Sacramento, California, and enjoys writing humorous personal essays (all stuck in various stages of revision), spending time with her partner and their aging Yorkie, and experimenting with weird eye makeup looks. You can contact her by visiting her website at http://annaham.net, or email her at hamdotblog[at]gmail.com.

Twitter: @annaham360