Regarding the “tender point” test referred to in this installment : In 2010, the American College of Rheumatology (ACR) revised the diagnostic criteria for fibromyalgia so that rheumatological exams do not utilize the “tender point” test. The new diagnostic criteria include a Widespread Pain Index (WPI) and Symptom Severity (SS) Scale.
NERVOUS SYSTEMS PART 7 IMAGE DESCRIPTIONS
PAGE 35 TITLE: Diagnosis
Panel 1: Anna reads at her desk.
Text: Still without any answers on the health front, I attempted to get back to my normal routine.
Panel 2: Anna imagines her neck painfully stretched into a snake-like form as she grimaces.
Text: The pain, however, was still there.
Panel 3: Anna meets with women’s studies professor Dr. Swain during office hours.
Text: One of my Women’s Studies professors called me in for a meeting.
Speech bubble, Anna: You wanted to see me, Dr. Swain?
Speech bubble, Dr. Swain: Anna! Please come in and have a seat.
Panel 4: Dr. Swain asks Anna what’s going on.
Speech bubble, Dr. Swain: I notice you’ve been very quiet in class lately. Is…everything okay?
Panel 5: An upset Anna tells Dr. Swain about her recent health struggles.
Text: It did not take me very long to tell her the whole story.
Panel 6: Dr. Swain hands Anna a business card.
Text: Fortunately for me, she had a contact at the Health Center.
Speech bubble, Dr. Swain: I think she’ll be able to help you find a good doctor!
Panel 7: Anna meets with Dr. Swain’s contact at the Health Center.
Text: A few days later, I met with the director of the campus Health Center; she recommended a skilled Rheumatologist in a neighboring city.
Speech bubble, Health Center Director: I’ll call in a referral today.
Panel 8: Anna nervously waits at the rheumatologist’s office.
Text: After yet another set of blood tests, I went to see the Rheumatologist.
Panel 1: The doctor examines Anna.
Text: The entire exam took less than 20 minutes.
Speech bubble, doctor: I’m just going to do a test…
Speech bubble, Anna: OW!
Asterisk: This test was repeated on several areas of my body.
Panel 2: The doctor gives Anna a diagnosis.
Text: I was a bit confused when she gave me a diagnosis.
Speech bubble, doctor: You have fibromyalgia.
Speech bubble, Anna: What the hell is that? Seriously, I’ve never heard of it.
Panel 3: Anna’s hands type on a laptop keyboard.
Text: When I got home, I looked it up online.
Panel 4: Anna looks shocked.
Text: The information I read seemed weirdly consistent with my symptoms.
Asterisk: The test, I learned, is called a “tender point” exam; see also Starlanyl and Copeland 2001.
Panel 5: Anna tries not to fall asleep at her desk.
Text: Things that I had thought were just too weird started to make sense…including the fatigue…
Thought bubble, Anna: HAVE TO STUDY. HAVE TO STUDY. TIRED
Panel 6: Anna yelps in pain.
Text: …the pain…and the fact that serious, health-related symptoms seemed to come out of nowhere.
Panel 7: Anna lies in bed and thinks.
Text: When I went to bed that night, I lay awake, unsure as to what it all meant, or if it “meant” anything.
Panel 8: Anna falls asleep and begins to loudly snore.
Text: Mostly, though, I was relieved to know that my issues had a name.
PAGE 37 TITLE: Navel-Gazing
Panel 1: Anna chants “ME ME ME ME ME” at the viewer.
Text: One common criticism of fibromyalgia as a diagnosis is that it supposedly gives ill people a label – one that causes them to “obsessively” focus on themselves and their “aches and pains.”
Footnotes: See Berenson 2008.
Panel 2: We see Anna’s neck twitch as she tries to work.
Text: However, those who have experienced non-acute pain know that it can be incredibly distracting…
Panel 3: Anna massages her neck.
Text: …and, at times, makes focusing on anything BUT the pain itself extremely difficult.
Speech bubble, Anna: WTF?
Panel 4: Anna tries to work through the pain and is unable to do so.
Text: Ignoring pain does not make it go away; in some cases, denying chronic pain may actually make it worse.
Speech bubbles, Anna: Must power through…OW.
Footnote: See Thernstrom 2010.
Panel 5: An exhausted Anna tries to push through her pain.
Text: The expectation that people (footnote) just “push on through” pain has deep cultural roots, but that doesn’t make it right, nor healthy.
Thought bubble, Anna: PUSH PUSH PUSH.
Footnote: Men in particular.
Panel 6: Anna lies on the floor as Winston the Yorkshire Terrier licks her hand.
Text: “Pushing through” can even further invisible-ize chronic pain and people who have it; we are often tasked with pretending that nothing is wrong…even if something hurts.
Thought bubble, Anna: SHIT
Panel 7: Anna and Winston lie in bed. Anna looks unhappy.
Text: With this demand, here again is the specter of the “hysterical” woman who is “too focused” on her own issues to fulfill her socially-expected role.
Panel 8: Anna lies in bed angrily. Winston snores next to her.
Text: That chronic, disabling pain can make women with it distinctly unable to fulfill the role of self-sacrificing, cheerful woman somehow makes women in pain threatening.
Thought bubble, Anna: FUCK IT.
Panel 1: Anna lugs a single giant rock with great difficulty; the rock metaphorically stands in for Western culture’s expectations of women.
Text: For all of the U.S.’s touting of itself as “progressive,” there are still numerous expectations heaped upon women – among them that women will take care of their [own] needs dead last, and the needs of others first.
Footnote: See Knapp 2002.
Panel 2: Anna sees an able-bodied feminist who balances multiple rocks with ease and with a smile; meanwhile, Anna struggles with her rock.
Text: With few exceptions, mainstream feminism has not quite tackled this social pressure substantially, nor considered it within a disability-centered framework.
Speech bubble, Anna: Really?
Panel 3: A pair of hands holds a rock labeled “care work” as a child, a senior, and a ghost standing in for “the ill” stand in the frame.
Text: Most “feminist” talk of ideal womanhood and care work still assumes that abled women do most of the caretaking for children, seniors, and “the ill.”
Footnote: Hillyer (1993) is one important exception!
Panel 4: The rock that Anna has been struggling to carry rolls over onto her and squishes her.
Text: Many women who deal with invisible, often disabling chronic pain and health conditions themselves actually complicate this binary of caretaker/cared-for.
Speech bubble, Anna: WHOOPS
Panel 5: Image of a woman, contrasting the expectations of ideal feminism and ideal consumerism.
Text: Some of feminism’s ideals, furthermore, rest upon (abled) women’s “liberation” from unpaid (or underpaid) care work. At the same time, we are sold a vision of the superwoman who can, somehow, be all thing
FEMINISM text (left): “Independent,” “liberated,” takes care of business
CONSUMERISM text (right): “Liberated,” but still everything to everyone
Footnote: See Jenny Morris 1996.
Panel 6: A mask decorated to look like Anna’s happy face appears at the bottom of the panel.
Text: Susan Wendell remarks that there is a powerful feminist imperative to “[…] wear the mask of success, strength and enthusiasm and never let it slip to reveal failure, weakness, or doubt.”
Footnote: Wendell 2007 (214).
Panel 7: A hand and wrist wearing a woman-symbol bracelet extends toward the blank space in the rest of the frame, as if prohibiting others from coming in.
Text: With such oddly contradictory mores in place, it’s perhaps not surprising that women with chronic pain, fatigue, and health conditions are both seen as “threatening” and are erased when it is convenient…Not to mention that they can become disenfranchised within feminist circles.
Panel 8: Anna continues to struggle under the rock.
Text: The woman who has good reasons to not be totally “other-focused” is dangerous to an established model of self-sacrificing womanhood.
Speech bubble, Anna: AHHH
PAGE 39 TITLE: If You Can’t See It, Does That Mean It Isn’t “There?” (Spoiler Alert: No)
Panel 1: Anna stands, looking concerned. An arrow to her right points at her, with the caption “Looks normal/healthy (is not)”
Text: One interesting facet of living with a non-apparent pain condition is the issue of forced passing.
Panel 2: Image of a standard cane.
Text: Basically, “passing” means that a marginalized person is able to be read as a member of the majority group and (maybe) escape scrutiny. (My own ability to pass often depends on whether I am using my cane that day.)
Panel 3: A copy of Nella Larsen’s book Passing.
Text: In a racial context, for example, a light-skinned person of color may be able to – or may be read as – pass(ing) for white.
Panel 4: Anna stands among other people at an event.
Text: A person with a non-visible disability may be read as abled because they do not have any of the “traditional” markers of disability.
Thought bubble, Anna: Can they tell?
Panel 5: Anna lies in bed, obviously in a lot of pain.
Text: However, much disability scholarship has left issues around passing – intentional or not – unaddressed, thereby contributing to the perception that invisible disabilities are “not really” disabling.
Speech bubble, Anna: ARE YOU KIDDING ME
Footnote: See Deal 2003.
Panel 6: A man addresses the viewer.
Text: Ethicist N. Ann Davis points out that those with non-visible disabilities are often subjected to a very specific ableist attitude that casts doubt upon the severity of their conditions…and which renders them more invisible.
Speech bubble, man: But you don’t LOOK disabled!
Footnote: See Davis 2005.
Panel 7: Anna talks to a well-dressed person at a party.
Text: I would add that this attitude
Speech bubble, person: You’re not disabled disabled.
Speech bubble, Anna: What?
Thought bubble, Anna: WTF?
Panel 8: Anna’s mom pats her shoulder, which causes Anna pain.
Text: If one is read as abled in certain situations by abled people – by relatives, by strangers, by entities such as the government – then claims of pain, fatigue, and disability become easier to dismiss.
Speech bubble, Anna: Ow, Mom.
Speech bubble, mom: My patting you on the shoulder can’t be that painful!
Panel 1: Anna lies in bed, in a lot of pain (again).
Text: The attendant expectation that disability be always public is troubling. For example, I tend to stay home when I am in a lot of pain because I am unable to function in public when my pain level is very high.
Panel 2: Anna talks to another person at a party.
Text: The fact that people are not privy to this display of pain or fatigue (or both) has, perhaps not surprisingly, been used against me.
Speech bubble, person: You can’t possibly be in that much pain! People in severe pain can’t do anything!
Speech bubble, Anna: Uh…
Panel 3: Anna speaks directly to the viewer.
Text: It’s a rather binarist mindset: either you perform ability or total, “real” disability in public – and there’s no in-between.
Speech bubble, Anna: There’s also a reliance on being able to “see” what “real” disability is – and this “realness” must measure up to abled people’s expectations.
Panel 4: Two doofuses, Meathead 1 and Meathead 2, talk about how much they hurt after working out.
Text: While I am concerned that a more fluid notion of disability may inspire some abled people to appropriate or mock the identities of PWD for fun…
Speech bubble, Meathead 1: I’m “disabled” too! My joints hurt after I work out.
Speech bubble, Meathead 2: Ha ha
Panel 5: A person scolds Anna, who is crawling through the frame.
Text: …I also believe that the current “I’ll know it [disability] when I see it” model has its limits.
Speech bubble, person: You’re not really disabled – you can still work!
Speech bubble, Anna: Then give me a job.
Panel 6: A quote from Susan Wendell takes up the entire panel.
Text: Forced passing also carries a large element of social control. As Susan Wendell (2007) writes: “People who are suffering are acknowledged in public or social life only if they can ‘pass’ as not suffering too much and do not talk about it…[this] tends to increase [the belief] that deviation from the conventional expectations of cheerful confidence and enthusiasm is unacceptable.”
Footnote: Wendell 215.
Panel 7: Anna looks forlornly at her “happy” mask.
Text: Those of us who “suffer” in part because of our bodies in pain are usually expected to keep quiet and hide it under a mask of cheerfulness, lest we bother others.
Speech bubble, Anna: This old thing again…
END OF PART 7