Jessye Kilburn
B.C.L./LL.B. III, Faculty of Law, McGill University
March 15, 2018
When doctors dismissed Jennifer Brea’s mysterious illness as psychosomatic, she turned to film. She began using her cell phone to film herself during periodic bouts of exhaustion, moments when one side of her body seemed paralyzed, times when her mouth could not form words. The sudden onset of these symptoms, which had been preceded by a fever of 104.7 degrees, was strange for an energetic and athletic 28-year-old pursuing a Harvard PhD.
Doubting herself after being told her condition was psychosomatic, Jennifer pushed through the pain: “My body was screaming, but I ignored it, because [the doctor] told me, ‘this has no biological cause.’” Eventually, Jennifer was able to see a specialist and was diagnosed with myalgic encephalomyelitis, a condition previously known as chronic fatigue syndrome.
An online search led Jennifer to a virtual community of people around the world with the same condition. Bedridden from her unrelenting exhaustion, Jennifer began to create a documentary film through Skype interviews with those she discovered online. The project eventually grew into an award-winning feature-length documentary called “Unrest.”
Still from “Unrest”
Source: https://www.unrest.film/
Myalgic encephalomyelitis (ME), as well as other “invisible illnesses” such as fibromyalgia or irritable bowel syndrome, form part of a litany of illnesses that have historically puzzled an often-unresponsive scientific and medical community. In the absence of indicia that anyone other than the patient can experience, these conditions are difficult to prove or study. In some cases, scientific advances have taken what was perceived as a somatized, feminized condition and turned it into a bona fide medical diagnosis: for example, multiple sclerosis was called “hysterical paralysis” until the advent of the CT scan.
“Myalgic encephalomyelitis” has recently replaced the term “chronic fatigue syndrome,” which lends a more scientific air to the condition, but it remains an “invisible illness” nonetheless. While there are certain constellations of symptoms that doctors may use to diagnose ME, there is still no one definitive test that can allow the condition to be seen, sensed or proved by anyone else than the person experiencing it.
ME can be sensed only deep within the body of the person experiencing it, perhaps in their very cells. Researchers have described ME as a disease that “may go to the very beating heart of what makes complex animal life possible – our mitochondria.” It appears to be “infectious, environmental and genetic,” it is “sporadic and epidemic,” and it “implicates the immune, nervous, cardiovascular, gastrointestinal and endocrine systems.” While recognition has slowly been increasing among researchers, this knowledge has sometimes been slow to trickle down to medical practitioners—as well as to the law.
Still from “Unrest”
Source: https://www.unrest.film/
Most people with ME are unable to work and some are indefinitely bedridden, requiring extensive care from either loved ones or professionals. The financial pressure that such an illness can bring often necessitates claims for government disability assistance or private insurance.
However, proving an invisible illness within the legal establishment may be even more difficult than within the medical establishment. Government agencies are careful gatekeepers of public funds for social assistance, usually requiring extensive evidence even beyond a doctor’s diagnosis.
The American Social Security Administration released a ruling on ME in 2014, a sign that the condition is beginning to gain greater recognition in the spheres of law and policy. The ruling recognizes that while certain medical signs or laboratory findings may indicate ME’s presence, the absence of those tangible findings does not necessarily indicate ME’s absence. However, the conditions laid out for the recognition of ME are nonetheless onerous. The caseworker will consider the physician’s diagnosis of ME as one part of the evidence, but will also conduct a deeper review of the entirety of the physician’s treatment notes “to see if they are consistent with the diagnosis.” The claimant must also provide evidence beyond the doctor’s diagnosis: “We cannot rely upon the physician’s diagnosis alone,” the ruling announces.
Time is another evidentiary issue. According to the ruling, “we generally need longitudinal evidence because medical signs, symptoms, and laboratory findings of CFS fluctuate in frequency and severity and often continue over a period of many months or years.” As a result, someone with ME cannot get disability benefits as soon as they become unable to work: they must get by somehow until enough time passes to render the illness sufficiently established or “real.”
Source: Screenshot from howtogeton.wordpress.com
Resolute Legal, a Canadian law firm specializing in disability claims, warns potential clients with ME that “because insurance companies consider [ME] an invisible medical condition, you will have to prepare diligently for this fight.” Since not everyone can afford to hire a lawyer to manage their claim, blogs written by folks with ME provide a repository of information and anecdotes on how to make a successful claim.
In “The Sleepy Girl Guide to Social Security Disability,” one blogger recounts the story of her labour-intensive journey to get American social security benefits despite all of her medical test results having come back “normal.” She not only went through 200 pages of medical records to circle the parts she wanted to highlight to the agent, she also wrote a letter to her homecare workers and every single doctor she had ever seen asking for additional letters of support. Given her severe fatigue, family support was essential in this process:
My mom collected every single medical record for me, plus treatment notes, plus laboratory tests from everywhere I had been in the past 1-2 years. Many of the tests did not show much, but there sure was a lot of them!
The sheer volume of medical tests was itself a tactic: even though the tests came back “normal,” their existence showed she was serious enough to undergo repeated testing. She was eventually successful in her claim, but even with her mother’s help, the process was exhausting and the exertion made her condition worse: “The doctor’s appointment was the first time I had left my house in three months. It took me a long time to recover.”
A blogger whose claim was denied on review warns others not to put on too much of a brave face for the doctor: “I had no idea that my doctor was writing notes about how I looked and dressed. He was writing that I was neat and clean and well-dressed and well-groomed and alert and oriented. When I got my denial letter and saw what my doctor had written, I was shocked. The judge ignored my psychologist because it didn’t match what my doctor wrote.”
Still from “Unrest”
Source: https://www.unrest.film/
The onerous burden of proving ME to the law’s satisfaction shows the legal obsession with evidence that can be commonly sensed—that is, experienced by the senses of someone else than the person suffering. If it is impossible to provide corroborated sensory evidence of the illness itself, then one must provide corroborated sensory evidence of what the illness is not. And one must show every failed attempt to produce such corroborated sensory evidence.
The sense required to feel ME is known as “interoception”, which is our sense of the internal state of our own body. In the case of ME, symptoms come from deep within a person’s sense of their body: a lack of muscle energy, joint pain without any visible swelling, a loss of memory, an inability to concentrate, headaches, dizziness, nausea.
Because what we feel with the pain receptors deep within our bodies cannot be sensed by anyone else, both medicine and law have been slow and skeptical in responding to ME and other un-senseable illnesses. In the legal domain, we think of a fact as “a state of affairs in the world, capable of being established by publicly accessible evidence and reasoning …[and] objective at least in the sense that it is the same for me as it is for you.” (Neal Feigenson, “Evidence of Subjective Experience” in Sheryl Hamilton et al (eds) Sensing Law at 35). Facts, then, are made through commonly-shared sensory experiences, not through one person’s word of their subjective sensations.
The heavy burden of proof borne by those with invisible illnesses calls for an examination of the implicit foundations of what the law considers to be a fact: we must ask ourselves at what point we are willing to believe someone without relying on the forms of proof we have learned to desire. How onerous and prohibitive must the burden of proof be before the deleterious effects on someone’s well-being outweighs our desire to conserve public funds?
Still from “Unrest”
Source: https://www.unrest.film/
The online community of those with ME have recently organized public demonstrations and Twitter campaigns with the hashtags #TimeForUnrest and #MillionsMissing, and with the recent release of Jennifer Brea’s film on Netflix, an informed awareness of ME is growing like never before. Among the last scenes of the film are shots of empty shoes lined up on public sidewalks in cities around the world, representing the “millions missing” who are housebound or bedridden rather than out and about in their shoes. Those with ME (and their loved ones) are using the arts to render an “invisible illness” more visible in the public square, giving those who cannot feel ME in their bodies no choice but to take notice.
All of the links in this Probe were accessed on March 15, 2018
For further reading and questions:
How does community play a role in invisible illnesses when medicine and the law fall short?
https://psmag.com/social-justice/how-disabled-people-care-for-each-other-when-doctors-cant
How do gender dynamics play into invisible illnesses?https://www.huffingtonpost.com/entry/opinion-dusenbery-medical-sexism-research_us_5a9e01c4e4b0a0ba4ad72a3c?v7
What is it like to make a claim through the Social Security Administration? https://www.ssa.gov/forms/ssa-3373-bk.pdf
What are the details of the American Social Security ruling? https://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html
What kinds of legal services are involved in making a disability claim? https://resolutelegal.ca/resources/disabling-medical-conditions/winning-disability-benefits-for-chronic-fatigue-syndrome/
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