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Summer-Fall '23

Tugging on a Thread: A Kind of History
Audrey T. Carroll

 

Let me tell you a story:
 

In the 2nd century, Greek physician Galen of Pergamum first used rheumatismos, later picked up again by 17th century French physician Guillaume de Baillou. The umbrella term of rheumatism could cover any number of musculoskeletal messiness, and I imagine it’s what I would have been diagnosed with if born in 1690 and not 1990. That is, of course, assuming that I would not simply be written off as a woman with a frail constitution, or a victim to hysteria, or under the power of some curse-induced malady. Things got more specific as medical science progressed, which led to fibrositis in 1904, and eventually fibromyalgia in 1981 (coined by Dr. Mohammed Yunus), though it wasn’t recognized by the American Medical Association until 1987, perilously close to the year when I would be born with what I assume was a genetic predisposition to chronic pain, not that anyone is absolutely positive on the role that genes play in this condition of this constant body ache. 


Professor X led the X-men from his wheelchair; he had powers of the mind that were among the strongest of mutantkind. The X-men were a staple of my childhood, first in the 90s cartoon and then in X-men Evolution, though it was never Charles Xavier who brought me to the episodes. I was always more interested in Jean Grey and Mystique. But the X-men is about outsiders, about rights, about how you use your power in the world. 

 

Aside from my beloved comics-inspired TV franchise, where were the disabled characters in fiction when I was growing up? Where were the characters with canes, with bodily limits, with illnesses?

 

There were villains like Captain Hook, or else the boy who uses a wheelchair and miraculously healed and able to walk again in The Secret Garden (1993), or the lovable-slash-pitiable Forrest Gump in 1994, or picture books about the inspirational-despite-the-odds Helen Keller. For every Professor X in the 90s and 00s, it seems there were at least three depictions of the disabled and the ill as villainous, inspirational, or worthy of pity. The idea of growing up and one day becoming disabled was never an imagined reality for me.
 


My bookshelf in high school was filled with all sorts of fantasy research for the novels I wrote based on the legends of the four treasures of Ireland. So many of the herbs that I read about to concoct my fictional potions listed the way that they’d be used for rheumatism, or sometimes rheumatoid arthritis. I had no idea what it meant, only that it kept coming up again and again, something that was widespread enough to need curing in any form that the curing might take. I assumed it was the old fashioned term for arthritis and moved on; it was irrelevant to my research about the Stone of Fál and folklore about woodland spirits. 


I wonder, sometimes, about how I would survive back when it would be rheumatism. A cane or walking stick would be an easy enough find. Would my dizziness be relegated to some feminine condition of swooning and fainting spells? Would I be able to find the herbs I needed to get through the day, to manage the pain, to think clearly enough to function, and would I be able to do so without getting myself killed for witchcraft? What would limit my ability to do what I needed to survive, the way disbelieving medical professionals and pharmacists who act like I’m drug seeking by picking up my refill do today? How would my life be different, and how would it simply be slightly varied shades of my life as it is now?
 


Even with criteria for fibromyalgia published in 1990 by the American College of Rheumatology, the condition continues to be controversial and stigmatized. Women’s pain is systematically ignored and disbelieved.  For my endometriosis, there are tests to prove that something might be wrong, and even then it took 15 years for a diagnosis for heavy bleeding, deep discomfort, and periods that lasted half the month to be taken seriously. Fibromyalgia does not even have this benefit. I went for blood tests, for a million pregnancy tests, for a CT scan with contrast fluid, for an MRI with contrast fluid, and only after all those tests came back with nothing could a diagnosis be uttered, and even then it is one that might be dismissed or written off by the wrong medical professional. I’ve lost track of how many times I’ve read in a Twitter thread or a memoir that having fibromyalgia in your medical file is code that you’re just a “crazy woman.”


The main test for fibromyalgia—assessing potential trigger points of pain—requires self-reporting by the patient, a method that is seen by many as unmedical or unscientific or, in the plainest of terms, essentially untrue. If it doesn’t use a medical test, if it doesn’t have something that the doctor can point to and declare in black-and-white, then how can it be accurate? How can we trust a patient’s word? How can we trust a woman’s word? (According to the statistics, fibromyalgia predominantly affects women, which is likely meant to be those assigned female at birth.) Surely such pain it is only uncomfortable and not truly disabling. I have been asked, by medical professionals and people who fancy themselves as such, if I’ve tried yoga, swimming, eating differently. They ask without thinking about the fact that I was, in truth, doing yoga regularly when my symptoms got to Cane Levels of Bad; I have monitored the fats and sodium levels in my food because they tend to exacerbate things. It doesn’t mean that I am suddenly free of pain, or that I don’t need my medication to continue cognitive and physical function, or that I don’t need my cane to stave off worser pain and mitigate dizziness. These clever little solutions that are meant as advice, solicited or (usually) not, downplay the severity, the pervasiveness, and the complexity of the condition. How can we trust a woman’s experiences? What if she’s just lying for the attention, after all? Maybe it’s all in her head (a notion which manages to not only dismiss the realities of mental illness, but also of literally any neurological and cognitive issues that a person might face).
 


Fibromyalgia doesn’t sound friendly or accessible or palatable or unthreatening. It’s an intimidating word, one that your tongue might take a while to get used to. It is long and ancient and foreign, meant to be stumbled over.


Its Latin root: fibro for fibrous tissues.


These are the connections of the body, the network from one cell to the next. This is the fire shooting along a system, straining along the pathways until so many sparks have fanned that their locations become indistinguishable.


One Greek root: myo for muscle.


Treated with heat, treated with ice, never enough.


And another Greek root: algos for pain.


Pain is the root of the whole damn condition.


It is much easier to shorten this mouthful of a condition; fibro sounds mysterious, but manageable.
 


Wheel of Fortune, I once read, was the first game show to include closed captions in early 1990, shortly before the Americans with Disabilities Act passed, signed into law exactly one month before I was born. I did not know this when it became my nightly show in 2020, something to ease my brain into the idea of sleep, something to distract from the day, a slightly more complicated version of a children’s game to make things a little less taxing. (I will note that I’ve seen conflicting dates for the closed captioning, mostly in 1986, and this uncertainty is not unlike my brain on fibromyalgia—sure until it isn’t, suddenly overcome by a fog that I didn’t see coming. Maybe the 1986 date is accurate, but I had definitely read 1990 in other places first.)
 


When the Americans with Disabilities Act passed in 1990, disabled people gained equal rights; so goeth the myth. This explains the indignant confusion that spurs abled people to say that malicious treatment of disabled people is illegal, that they should sue; it’s how the system should work, surely. But what actually is the ADA? After some preamble about how disabled people are people, it emphasizes first the need to let disabled people into the job market, because disabled labor is a resource better tapped into than not. It has flashbacks to the War on Drugs, insisting that a “QUALIFIED INDIVIDUAL WITH A DISABILITY” does not include those who use such illicit substances. Much of the document is spent on public spaces, especially transport, and wheelchair users. There are requirements for communication and closed captioning. But even with addendums and patches, the document is not one that has solved every disabled person’s systemic discrimination, not even on a basic legal level. 


That’s because what the ADA isn’t is a cure for ableism. It doesn’t guarantee marriage equality—something I was afforded in 2015 as a queer person, mere weeks before my own wedding—because of the forced poverty that is tied to disability benefits, like having a $2,000 limit on assets as a single person or $3,000 as a couple. Your spouse’s income or assets might cause you to lose your benefits, the assumption being that you can simply be dependent upon this other person. This is without even considering the smaller slights of disabled life—the microaggressions in the education system, the lack of access to public buildings because of loopholes, the “Can you lift 20 pounds?” question on job applications where it is irrelevant except as a means to weed out disabled people from the pool.
 


Lyrica was the first FDA-approved medication for fibromyalgia. It was approved in 2007, a year before I would graduate from high school. At the time, I was in Poetry Club and taking Pre-Calc and Earth Science and AP Spanish. Disability had never occurred to me as something that I might have to face, even as I was in the process of the trauma-inducing years of my life that may have very well been the beginning of my chronic existence. Lyrica is one of those drugs I’ve seen advertised on TV commercials on-and-off over the years, with women walking dogs, coaching softball, and gliding along a beach with their family. But I had never noticed the word fibromyalgia attached to it; those sorts of commercials were an opportunity to pour my coffee or grab something from the other room. The first time I could remember hearing the word of my condition was from the neurologist who diagnosed me. 


Only two other drugs had been approved, the anti-depressants Cymbalta and Savella. Another anti-depressant that is used off-label includes Celexa/citalopram. I took Celexa just before my fibromyalgia symptoms started. I’m convinced was the straw that broke the camel’s back. I had an allergic reaction including black tar vomit, being physically unable to eat, and being physically unable to stay awake. The medical professional who told me that I was vomiting black tar because I must have had some bad spinach would be the same medical professional who, months later, insisted I was simply depressed or pregnant when I came in with a fibromyalgia flare. Though I only took Celexa for a couple of days, I went into a violent withdrawal, spending a whole day with such ferocious body tremors that it truly felt like I was dying. I could feel the tension coiling in every muscle and every nerve, everything inside of me pain. In the months to come, I would be off, logging my sleepiness in social media posts, and one particularly stressful day about six months later sent me on a diagnosis hunt. 


The two anti-seizure medications that are used for fibromyalgia are Lyrica (officially approved) and Gabapentin. I refused to use even what I called “cousins of SSRIs” after my experience with Celexa, so the General Practitioner and I chose Gabapentin from the neurologist’s suggested list. It was the first medication that we tried and it worked, despite the odds being more or less 50-50.
 


“Controversial.” “Dilemma.” “Ongoing debate.”


These are some of the phrases that come up when reading about fibromyalgia. This sense of myth comes from all different angles: fibromyalgia isn’t real; the diagnostic process lacks scientific veracity; treatments lack strong medical evidence. There is discomfort around using patients’ self-reports for a diagnosis, as though a person is unable to tell that something is wrong within their own body, as though something which cannot yet be tested with current medical capabilities cannot exist. There is an impulse from some to write off chronic pain and memory trouble and fatigue as depression or anxiety, something which should be relegated to therapy and not other specialists in other fields. 


And people seem to think me a mythic creature as well: I should not, after all, have been diagnosed with something so lifelong at such a young age; I should not have to use a cane before the age of 30. It echoes my reactions to those who believe my bisexuality to be similarly impossible: I cannot be bisexual and married to a man; bi people don’t exist, they just haven’t chosen a side; you cannot be bi if you’ve only dated one gender. Social pressures help keep things a certain way, maintaining a status quo and norm that feel comfortable and safe for those who fit in with such expectations. For me, however, after so many years of being told by others that my feelings weren’t valid and that I was painting my experiences with profuse melodrama, the impulse is to only dig my heels in, to assert my reality more firmly, rather than to concede every part of myself to what it allegedly should be. It would be wonderful to not have to worry about what day I’ll wake up with stabbing in my hips, to not have to be concerned that I will forget parts of a lesson plan, to not have nightmares where I’ve forgotten my cane somewhere and I cannot find it. 


But there is myth and there is reality.


Illness makes people uncomfortable. They want to find the solution, the cure; illness is a problem, and everyone fancies themselves a bit of a Sherlock Holmes. Some illnesses are more easily spun into a narrative with a completable arc—cancer, chemo, and then an end, whether by remission or by death. But chronic illnesses, especially those that aren’t terminal or even progressive, deeply unsettle by their very nature. It is beyond comprehension that, in this day and age, we don’t have a pill for that, or a surgery, or some superfood or physical therapy or other miracle. It isn’t enough to have a pill that alleviates the illness or, if it is, then does the illness even count, really?


And then there is disability, the constant threat. You, too, could one day need a cane, or be unable to carry your child in your arms, or be in a constant pain even with treatment. The distain for the disabled is, at least in some ways, the manifestation of a fear of what could be for the able-bodied, should the winds of fate blow ill one day.
 


And on the opposite end of history: the future. Disability and anxiety spin together to a grim vision of what is yet to come. When I move one day, will I lose access to the medications for my fibromyalgia and endometriosis? Will I end up with a skeptical doctor, or an outright ableist one, who doesn’t believe fibromyalgia even really exists? Or a doctor who doesn’t acknowledge the veracity of my endometriosis and the need for medication to control it? This only multiplies in a family with multiple people who are ill and/or disabled. What are the odds that you all find new doctors who take your insurance and give you the treatment you need? What about educational needs? Careers? 
 

The mysteries of the future only become more laden with thorns as your body moves away from the abled and healthy end of the spectrum. In the end, everything comes down to a single question asked a million different ways: What am I at the mercy of?

Audrey T. Carroll is the author of the What Blooms in the Dark (ELJ Editions, 2024), Parts of Speech: A Disabled Dictionary (Alien Buddha Press, 2023), and In My Next Queer Life, I Want to Be (kith books, 2023). Her writing has appeared in Lost Balloon, CRAFT, JMWW, Bending Genres, and others. She is a bi/queer/genderqueer and disabled/chronically ill writer. She serves as a Diversity & Inclusion Editor for the Journal of Creative Writing Studies, and as a Fiction Editor for Chaotic Merge Magazine. She can be found at http://AudreyTCarrollWrites.weebly.com and @AudreyTCarroll on Twitter/Instagram.

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