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Hannah Aurora Recknor

Discourses of Invalidation: Navigating Chronic Illness Narratives

About a year ago, I faced a conundrum of self-representation. I think all college

applicants do, to some extent, but my axes of identity and identification were complicated by the

chronic health issues that have had significant impact on my life for several years. My conditions

fall into a category colloquially referred to as “invisible illnesses” (specifically dysautonomia,

which I will discuss later). Not only did I have the burden of proving, against stereotypes, the

legitimacy of my illness, I also had to avoid the pitfall of seeming “too sick” by putting a

“positive spin” on my illness and proving my strength as a candidate through neoliberal narrative

techniques. These obstacles weighed heavily on me, not only with respect to getting accepted

into colleges, but in the realization that it is practically impossible to describe with integrity and

truth-to-self an experience that could not be made sense of in available discourses. My words

were distorted by the semiotics of illness. The writing of my college essay was merely one

example of a narrative I must negotiate, under significant sociolinguistic constraints, in many

conversations and interactions related directly or indexically to my condition.

Chronically ill individuals, in ways that parallel other marginalized groups, are burdened

in many ways by discourses that preemptively define their identity through hegemonic

ideologies, linguistic and otherwise. Discourse, as interpreted by Foucault, Hall, and others, is

seen as the institutionalised ways of thinking that govern how a particular subject can be

represented (Hall 1997, 44). One can think of discourses as semiotic lexicons defined by the

powerful, and they provide standard narrative templates in which one’s story may “make

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sense.” Marginalized individuals must communicate within the very discourses that stigmatize

and invalidate them to begin with, because any language outside of socially accepted discourses

is deemed senseless and met with denial and even insinuations of madness (Young 1990, as cited

in Galvin 2003). This effectively censors nonconforming narratives and keeps those who are

othered relatively powerless with regards to the construction and negotiation of their own

identities. A Western ideology that presents particularly insidious challenges for medical

narratives is neoliberalism. Neoliberalism is founded on the dichotomy between success and

failure, the assumption that all individuals have equal access to the former, and the association of

success with hard work, positive attitude, and conformity to norms of sociality.

Personal and categorical illness narratives are not by any means created autonomously.

The concept of intertextuality necessitates their interaction with previous, as well as co-

occurring, discursive narratives. A person’s illness and their identity with regards to said

condition is formed mutually by themselves and others-- others who tend to benefit from the

power accorded by relative normality. The success of an illness narrative (success being defined

as less pejorative towards the subject) depends on the collusion of those who have the power to

judge and define-- the healthy and/or authoritative. The main focus of this paper will be the ways

in which chronically ill individuals are semiotically and discursively invalidated and common

means of negotiating this invalidation. I will specifically engage in analysis of these issues with

regards to my own chronic illness, dysautonomia, and the ways in which neoliberal ideology

insidiously clouds medical narrative and forces the uptake of certain stances.

People with disabilities, diseases, or other conditions that separate them from the

“healthy” norm are, as a whole, stigmatized and socially marginalized. However, there are

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significant differences in how society receives various types of afflictions, differences that are

mostly unrelated to the variation in physiology. Societies, throughout history, have created

narratives to explain illnesses, and these narratives change over time. In her TedX talk on

Invisible Illnesses and Incommunicable Diseases (2013), Emily Reach White, an expert in

narrative medicine, discusses the differences in cultural perception of cancer and Lyme disease (a

partial transcription can be found in Appendix Three). She notes that cancer was, well into the

20th century, seen metaphorically as a disease of the oppressed and the impotent. Now, in a huge,

multi-billion-dollar industry of research, fundraising, and awareness campaigns, cancer patients

represent the pinnacle of purity, transformed via the disease into either heroes or martyrs.

Contrastingly, “lyme disease and other invisible and mental illnesses [are construed] as diseases

for paranoid hypochondriacs.”

My particular “invisible illness” is dysautonomia. Dysautonomia, an umbrella term for

any condition relating to dysfunction of the autonomic nervous system, is like other “invisible

illnesses” in that its legitimacy is widely questioned by both medical professionals and society at

large. Dysautonomia occupies an uncomfortable position in the diagnostic realm because there is

no simple, quantitative test to validate it. This means that the ‘burden of proof,’ so to speak, rests

exclusively on the patient’s narrative. This burden is felt both in the attempts to get a diagnosis

from a doctor-- and it is noteworthy that a diagnosis, a label backed by the authority of the

medical profession, is highly influential cultural capital for the ill-- as well as in explaining one’s

illness to those who are unfamiliar with the condition (which is most people).

Confounding the under-diagnosis of dysautonomia and lack of awareness within and

outside of the medical world, or perhaps even a reason for it, is the indexicality of

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Dysautonomia’s symptoms to illnesses that have historically been seen as illegitimate.

Dysautonomia’s symptoms are varied, widely unpredictable, and often vague. Moreover, they are

poignantly reminiscent of illnesses that have been historically classified as “women’s issues.”

This is of sociological importance because women’s illnesses have often been disregarded as

hypochondria or attributed to mental illness and character flaw. Furthermore, women have

historically been labeled as mentally ill when they fail to conform to dominant social ideology

and norms. “Women’s illnesses” such as chronic pain, chronic fatigue, fainting, etc. are

inextricably linked to the assumption that they are “not real diseases” or “all in one’s head.”

Which brings me to the common symptoms of Dysautonomia: dizziness, lightheadedness,

fainting, fatigue, migraines, nausea, brain fog, feverishness (the list goes on).

Here we see how deeply medical discourse is affected by cultural discourses-- there are

no words with which an individual with Dysautonomia can describe their symptoms without

indexing cultural derision and invalidation of those very complaints.When a doctor’s initial test

orders for common disease markers come back negative, they will almost unanimously

invalidate (either intentionally or unintentionally) the integrity of the patient’s story so that their

professional competence is not challenged. Doctors will thus, both directly and indirectly, assert

that the symptoms are, firstly, both subjective and relative (meaning the patient may just be

intolerant of discomforts faced by the average person), secondly, have psychological rather than

physiological origins (i.e. they are due to anxiety or depression), and, thirdly, that there is little to

be done by a medical professional. This evidences a deeply ingrained confirmation bias within

medical discourse-- a bias that is initiated by the patient’s narrative and, when confirmed, results

in the invalidation and narrow understanding of said narrative.

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People with chronic illnesses, particularly invisible illnesses such as dysautonomia, are

left extremely vulnerable to pejoration of their character. This is because of the socio-

psychological instinct that situates internal attribution as the default assessment of personal

narrative. The symptoms of dysautonomia, particularly fatigue, are easily construed as symptoms

not of a physiological ailment but of deviation from moral values-- in other words, signs of a

flawed character. Similarly to perceptions of mental illness (or, rather, the same because the

distinction is not recognized and psychological origin is assumed), invisible illness is seen as a

failure to be a “successful” and “productive” member of society. “Submission” to symptoms is

seen as weakness, laziness, and lack of integrity (or, conversely, those and other character flaws

are seen to cause the fabrication of the symptoms). The saddest part, and I know this from

firsthand experience, is that these ideological assumptions are internalized and cause individuals

with chronic illness to question their motives and the “realness” of their condition.

This is the discourse within which an individual with an invisible illness must construct

their narrative and their identity. The relationship between the speaker’s narrative identity, the

narrative itself, and the discourses informing people’s perception of it determines the levels of

understanding, acceptance, compassion, and even humanity shown to the subject. I propose that

the reception of those affected by illness, both as individuals and semiotic categories, hinges on

their ability to manipulate popular discourses so that, despite being othered by their condition,

their “core” identities-- most specifically rendered through stance-- conform to broader social

ideologies. We need both doctors and healthy individuals (as representatives of “society”) to

collude in a positive representation of our identity. That is not to say that success in this endeavor

restores power and selfhood to individuals-- on the contrary, as the success hinges on working

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within problematic frameworks, it still results in oversimplification and objectification of

subjects. Pressures to construct a narrative impression of “successful coping,” which come from

both within and outside of the chronically ill community, are often harmful and perpetuate the

oppressive internalised rhetoric that marginalizes people will illnesses to begin with.

A highly determining aspect of medical narratives is stance, which refers to the position

one takes, or is assigned through social interaction, towards one’s utterance with regards to its

content or delivery (Jaffe 2009). The success, impact, and conferred meaning of an utterance is

often pivotally linked to stancetaking savvy. My college essay, for example, required a

communicative self-consciousness in which I had to carefully craft a position towards my illness

so that my identity could transcend the constraints of “being ill.” Stance becomes all the more

important when there are overlapping and contradictory discourses regarding illness and identity.

As Bonvillian (2011) puts it, medical discourse is a context “characterized by depersonalization,

detachment, and intrusion into the self,” and yet “moral messages are frequently uttered by

doctors” and, I would argue, laypersons, “under the guise of scientific objectivity” (364, 362).

The “intrusion into the self” can seen as the process by which an ‘abnormal’ individual loses

power over their own narrative, has their identity reduced to the stereotypes surrounding their

illness and illness in general, and is made vulnerable to the stories others project onto them.

Jaffe (2009) cites stance as “a crucial point of entry in analyses that focus on the complex

ways in which speakers manage multiple identities” (5). There is a tendency to situate multiple

“selves” in what McIntosh calls a “nested hierarchy,” with a privileged or “core” self that allows

for a sense of deeper order and coherence (2009, 73). In medical narratives, it is important that

the subject impresses upon their audience a sense of core identity that is not their illness and its

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stereotypes. This is extremely difficult because, as Galvin (2003) notes in her discussion of

disability, “stigma as a form of negative stereotyping has a way of neutralising positive qualities

and undermining the identity of stigmatised individuals.”

Through stancetaking, people with chronic illness may distance themselves from their

condition-- they often take up an adversarial stance, framing their narrative as a battle between

their “good” core self and the illness that threatens to take it away. However, their projections of

what makes a core self good are largely motivated by social standards that limit to a problematic

extent the ways in which someone with an illness can be seen as coping “successfully.” On the

one hand, an individual must seek validation for the fact that their health does deviate from the

norm in a significant way and, on the other, they must construct an identity that fits neoliberal

idealization of personal tragedy and “overcoming” it. This core identity must be viable against

the strong tendencies of others to attribute invisible illnesses to flaws in said identity.

People with any chronic illness, but especially those with misunderstood “invisible”

illnesses, are attributed far more control over their symptoms, prognosis, and recovery than they

actually possess. Our neoliberal society privileges hard work, determination, and a will to

succeed that overcomes all odds, and these things are demanded of chronically ill individuals

without a respectful understanding of their limitations or conditions. People tend to equate

symptoms such as extreme fatigue, headaches, and weakness, which can be debilitating, to what

they experience as daily discomforts that one can “push through.” The propagation of

pseudosciences that preach the “healing power of positivity” can be extremely harmful to the

perception of patients because it implies that any failure to recover or live as a “normal,”

conforming person is because they “aren’t trying hard enough” or have the “wrong attitude.”

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This mindset is exemplified by a Fox News health segment entitled “Using Positive

Psychology to Cope with Chronic Illness” (see Appendix 1 for a full transcription). Here is the

interviewer’s introduction to the segment:

1 Dr: Hello, welcome to Health Talk, I’m Dr. Manny. Did you ever think that positivity 2 could be used as a drug? Well when we have a positive outlook of life our brain becomes 3 more engaged, motivated and productive and this can help with our health. Joining me 4 today is author and Harvard researcher Sean Achor to tell us how he is helping people 5 with chronic illnesses by using science behind positive psychology. And then with Sean 6 is Michelle who is using Sean’s steps and techniques to overcome the challenges 7 she’s facing living with MS. Welcome—POSITIVE ATTITUDE ---LOVE IT 8 I think it’s important. But anyways the two of you were brought together through 9 a program called Every Day Matters, right? Tell me about the program.

This introduction sets up several implied evaluative stances that contextualize the rest of

the interview. Firstly, the equation of positivity to a drug belittles the need for actual drugs or

medical intervention, putting the burden of recovery on an individual and their attitude. The

second sentence is indexically seeped in neoliberal ideology that privileges “engagement,

motivat[ion], and productiv[ity].” The juxtaposition of these assertions with the program

focusing on chronic illness invalidates the fact that chronically ill individuals live under

conditions significantly different than the “normal” healthy individual these ideologies cater to.

Interestingly, Michelle’s current physical state is never discussed, but because she does not look

physically abnormal it is implicitly assumed that she is “okay,” however false that assumption

may be; that appearance of “successful coping” or even recovery is contextually attributed to the

program and rhetoric under discussion. Needless to say, Dr. Manny takes an enthusiastically

positive affective stance towards the program and its ideology.

In explaining said program, Achor alludes to his goal by saying, “and at the end we are

gonna tell their story back out to the MS community and beyond because part of what we want to

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do is show that Happiness really is a choice” (lines 19-21). This follows a common trope that

frames “victims” of “adversity” as examples for the general population, i.e. if they can push

through and maintain conformity (and are lauded for it), so can everyone. The claims that the

program is making has little to do with the condition of its subjects other than exploiting and

perpetuating stereotypes surrounding illness.

Achor later defines happiness as “the joy we feel striving towards our potential;” he

frames the momentary “ups and downs in your life based on your work or based on your chronic

illness” as being peripheral trivialities (25-29). This simultaneously invalidates the impact of

chronic illness on one’s well-being and abilities and insinuates that unhappiness is an inability to

follow norms of achievement-oriented values. It also entrenches happiness (and happiness-based

rhetoric) as a powerful tool of erasure of “superficial” conditions such as chronic illness. All of

these assertions, which are merely explicit references to the discourses that implicitly frame all

illness narratives, force Michelle and other people in her subject position to collude in this

understanding of illness despite its invalidation of their experience. Taking a dissenting stance

towards this sort of rhetoric implies a choice to be unhappy and sick and a lack of “normal” or

“healthy” drive, and thus risks ostracization.

Dr. Manny and Michelle jointly label the ‘obstacle’ she overcame as “fear factor,” though

notably it is Dr. Manny who suggests the term-- naming is a privilege reserved for the powerful,

after all (Bonvillian 2011, 352). This and similar comments erase the reality of her physical

obstacles and emphasize the indexical stereotyping of illness as a primarily psychological

problem. It is easier for society to explain the marginalization of unhealthy people through

imagining them as having failed to meet standards of emotional expression and management

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rather than confront the problems of a social hierarchy based on othering. This rhetoric is

dehumanizing in that it equates acknowledging pain and physical struggle to cowardice and

personal failure.

51 DR: I think that if you—you know—as a doctor I deal with many people with chronic 52 illnesses and yes they take that “OH MY GOD”—the glass is always empty and and I 53 think that they compound a lot of secondary symptoms due to the sadness, due to the 54 depression which then you know as a doctor sometimes I don’t know what I’m chasing.

Here Dr. Manny uptakes a markedly negative evaluative stance towards emotional

weakness. He even blames patients for “compound[ing] a lot of secondary symptoms due to

sadness” and “depression.” His stance towards his patients and their illnesses is affected if he

associates them with such emotions; the illness is less legitimate and he suggests that it may even

be phantasmal when he says “sometimes I don’t know what I’m chasing” and, later, “am I

chasing a ghost of a symptom” (56). This indexes one of the most feared scenarios for people

with chronic illness: that a doctor will tell them their symptoms have no physiological basis and/

or are imagined. The threat of this accusation further serves to police what sort of stances

patients can take towards their illness, preventing them from seeking support for the emotional

trauma that results from having an illness (and the ways emotions are often chemically affected

by the physiologies of the illnesses themselves).

Interestingly, the discussion of the specific methods and effects of the program and

positive attitude in general centers around sociality. Michelle attributes her increased well being

to the positive impact of the program on her social network (50). One of the specific techniques

Achor describes is a 21-day daily exercise of writing an email “praising or thanking somebody in

[the subject’s] social support network” as a way to “meaningfully activate” and “deepen” social

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connections (65-74). He goes on to claim that “previous research has shown that if you can

deepen social connection it could be as predictive of our longevity as smoking, high blood

pressure, and obesity which of course we know those roles” (77-79). Here is another projection

of neoliberally-centered values onto health and wellness-- the success of a person coping with

illness depends on their ability to maintain “normal” social connections, and such maintenance is

linked to both happiness and physical wellbeing. “Activating” these social connections

supposedly requires the subject to take up a stance of indebtedness and gratitude towards others,

as though they must take responsibility for their condition and apologize for the burden they put

on their friends and family.

One would think that people might find refuge from these oppressive rhetorics among

other chronically ill individuals. However, the internalized pressures of presiding stereotypes and

the awareness that, as a group, they face tremendous scrutiny can lead to well-intentioned, yet

equally insidious, behaviors. As Galvin notes, “language is constructed with the purpose of

representing and perpetuating certain systems of meaning,” so regardless of the intent of

language users utterances are burdened by the oppressive discourses that inform them (2003).

Perhaps it is an attempt to assuage the general public of their validity, or to control stereotyping

by policing group behavior, but some support networks, such as Dysautonomia Youth Network

of America (DYNA), effectively further internalized stigmatization in the chronically ill.

DYNA is meant to serve adolescents with dysautonomia by spreading awareness,

providing accurate information, and supporting patients through their recovery. Of particular

interest is their Youth Ambassador program, a selective online support group that I was actually a

part of until I realized how saturated its rhetoric was with an oppressively enforced image of

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“successful coping.” One of their main slogans, appearing throughout their website, is “live your

recovery, not your illness,” which is all fine and until you couple it with some of their other

rhetoric. Some excerpts from the website are included in Appendix 2. “The Youth Ambassadors

Program is open to emotionally healthy individuals” is perhaps the most troubling, yet

emblematic, statement they put forth. The assertion that only “emotionally healthy” teens can

“represent” dysautonomia, or commune within this program, limits validation to those who

conceal emotional weakness. A description of the attitude “associated with” recovery includes

the directive “don’t pollute your brain with drama from individuals who are not coping well and

living pity parties.” That not “coping well” (a distinction defined by hegemonic ideology) can be

seen as a “pollutant” is indicative of social hierarchy within communities of the chronically ill.

The “pure” individuals who have clarified their narratives to exclude personal weakness are

encouraged by a youth support organization to effectively ostracize those who have not.

The evaluation of how “well” one is coping is largely determined by stance. Everybody

with a chronic illness experiences sadness, hopelessness, self-pity, etc. at various times, but, in

order to receive validation, must distance their projected identity from these emotional

experiences. The “attitude” encouraged is proposed to have internal effects-- through it, one can

find happiness and recovery, after all-- and yet it boils down to strategic narrative. Individuals

must take up a stance towards their illness that strictly limits their ability to seek comfort,

support, and understanding for the devastating physical, emotional, and social effects of their

conditions.

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Appendix One

Fox News Health Segment: Using Positive Psychology to Cope with Chronic Illness

Transcription

1 Dr: Hello, welcome to Health Talk I’m Dr. Manny. Do you ever think that positivity

2 could be used as a drug. Well what we have a positive outlook of life our brain becomes

3 more engaged, motivated and productive and this can help with our health. Joining me

4 today is author and Harvard researcher Sean Achor to tell us how he is helping people

5 with chronic illnesses by using science behind positive psychology. And then with Sean

6 is Michelle ___ who is using Sean’s steps and techniques to overcome the challenges

7 she’s facing living with MS. Welcome—POSITIVE ATTITUDE ---LOVE IT

8 I think it’s important But anyways the two of you were brought together through

9 a program called Every Day Matters Right? Tell me about the program

10 S: Well it’s an incredible program.. It’s a partnership between the National MS society

11 and Genzyme and what they’re doing is they want to make positive psychology the tools

12 we have been learning about how we can raise peoples’ level of happiness. We wanted to

13 find ways to make it more practical. So I wrote a book called The Happiness Advantage

14 and in it I tried to summarize some very simple tips and what types of habits people do

15 based on the research. So the Every Day Matters campaign is they took 5

16 individuals—they had 1200 people who applied to be part of this program who have MS.

17 We picked five of them based upon the different challenges that they are experiencing

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18 and they’re reading through The Happiness Advantage. They are practicing the habits

19 with Michelle over a period of a couple months. And at the end we are gonna tell their

20 story back out to the MS community and beyond because part of what we want to do is

21 show that Happiness really is a choice.

22 Dr: so when you mean being happy you mean attitude—positive attitude right? Now

23 you’ve done a lot of research on this-- and How would you define the program? How

24 would you define the topic of being positive?

25 S: Well, first of all the way I define happiness is not just the pleasure that we normally

26 feel, it’s the joy we feel striving towards our potential. The reason that we love this

27 definition is because part of what it does is it takes away from the momentary pleasures

28 we can feel—you can feel ups and downs in your life based on your work or based on a

29 chronic illness it doesn’t necessarily mean that you are not happy.

30 Dr: So because I want to make the distinction out there because there’s been a couple

31 papers relating to this—you’re not talking about lying to yourself right?

32 S: Right.

33 Dr: So you’re not talking about NO NO NO oh they told me I had a problem but I don’t

34 believe them I am going to be happy –I’m going to ignore their advice. That’s not what

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35 you are saying. Now Michelle, you’ve been using when you’ve been working with

36 Sean—how has this been helping you? Because you suffer from MS right?

37 M: I have MS and I would’ve chosen to have MS but I feel fortunate to be working in

38 this program with Sean and The MS society and Genzyme because I really live the

39 principles of the positive psychology. I’ve had MS for about 21 years right and in the

40 beginning I was afraid and every night I would go to sleep thinking am I going to be able

41 to walk. And that lasted like six months and I thought you know—I’m not gonna live the

42 rest of my life like this.

43 Dr: So was that the fear factor?

44 M: yeah that was the fear factor and I decided I was not going to take an inventory every

45 day when I get up to see what’s wrong, I’m gonna take an inventory and be grateful that I

46 can walk. And then I’m going to learn how to run. And I’m going to focus on the

47 positive.

48 Dr: and that really helped a lot?

49 M: I believe it really helped me a lot to increase my well-being. I think it had an impact

50 on my social network which it in effect increased my well-being.

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51 DR: I think that if you—you know—as a doctor I deal with many people with chronic 52

illnesses and yes they take that “OH MY GOD”—the glass is always empty and and I

53 think that they compound d a lot of secondary symptoms due to the sadness due to the

54 depression which then you know as a doctor sometimes I don’t know what I’m chasing.

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Appendix Two:

DYNA, Inc. Webpage Description of Youth Ambassador Program, etc.

Live Your Recovery Not Your Illness!

DYNA Youth Ambassadors are a pioneering group of young advocates who are afflicted with

dysautonomia conditions and who, instead of feeling sorry for themselves, are taking action by

volunteering for the DYNA organization, spreading accurate information, promoting group

awareness and offering each other support via a private forum. They are not self-serving or self-

promoting individuals.

Who should apply?

The DYNA Youth Ambassadors program is open to

emotionally healthy individuals . . .

[list continues]

The youth ambassadors program is not

NOT a place to hold pity parties.

NOT a place to promote drama.

NOT a place to endorse alternative or controversial treatment options.

NOT a place for individual self-promotion.

NOT a place to solicit.

NOT a place for those who do not want to participate on a regular basis.

NOT a place for those who do not want to reach out to others.

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NOT a place for those who just want to attend DYNA's Patient/ Caregiver Conference.

NOT a place for Internet dating relationships or teen popularity contests.

...there are certain attitudes that have been associated with patients who live successfully

with and/or recover from childhood dysautonomia conditions:

Take life one day at a time. Tomorrow is another day.

Accept the challenge. Consider the hardships as challenges to overcome.

Accept the path you are on and reject using your energy on “why me?” attitudes.

Learn about your condition from reliable, honorable resources and avoid misinformation from

unqualified sources.

Don’t pollute your brain with drama from individuals who are not coping well and living pity

parties.

Take responsibility for the parts of recovery you have control over (fluid and sodium intake,

physical activity, sleep hygiene). If you don’t do your part – don’t expect to make forward

progress!

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Appendix Three

Invisible Illness and Incommunicable Diseases: Partial Transcription

“I was interested in the role that story plays in determining what counts as a disease in the first

place.

So let me explain. um. like if you have cancer or any other disease from the established disease

canon, from this register of approved diseases, if you have cancer, people will listen to you. if

you have cancer, people will run 5ks and pass acts in congress and start telethons and buy

bracelets and pink things to the tune of billions of dollars a year to raise funds for research. If

you have lymes disease, you’ll get letters from your health insurance company telling you they

can’t cover any of your treatment because the IDF guidelines don’t recognize your condition. if

you have lyme disease, you will go broke while you’re going for broke. If you have cancer and

you’re a kid, the make a wish foundation will see to it that you meet your favorite celebrity and

go to disney world. If you have lyme disease and you’re a kid, your gym teacher will tell you

that you have to dress out unless you can get a note from your doctor and your teachers will fail

you for missing too many days of class.

If your dad has cancer, people will organize workshops and therapy groups for you and tell you

that it’s okay to express your feelings. If your dad has lyme disease, people will tell you that he

doesn’t love you, that if he loved you, he would get better.

If your husband has cancer, ladies from your church will show up with casseroles. If your

husband has lyme disease, ladies from your church, people from your own family will tell you

you should leave him. They’ll call you an enabler. But you’ll be too busy helping him crawl from

�20

the bed to the couch or steadying him as he stands to use the bathroom to wonder what exactly it

is you’re enabling him to do.

If people ask you is your dad sick and you say he has cancer, their eyes will well up and they’ll

say “is there anything we can do”, and they will mean it. If people say “is your dad sick” and you

say “he has chronic lyme disease,” they will look confused for a minute. and then they’ll smile

and shake their heads and say “well, at least it isn’t cancer.”

…As diseases, they’re both very similar. But there are significant differences between the two

diseases culturally….

…And now in the 21st century people are explaining a way that lyme disease and other invisible

and mental illnesses as diseases for paranoid hypochondriacs. These are diseases that people get

when they need to have a disease. The main problem with these illness metaphors that we create

is that we don’t create them to comfort the sick, we create them to comfort the well.

We create them to reassure ourselves that we are above sickness, that sickness is a personality

quirk, it’s something that happens to those people or it’s worse than that, it’s something that those

people cause it’s not something that happens to them.

�21

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Watch "Invisible Illness and Incommunicable Diseases: Emily Reach White at TEDxGreenville"

Video at TEDxTalks. (2013, May 2). Retrieved December 21, 2015, from http://

tedxtalks.ted.com/video/Invisible-Illness-and-Incommuni