Believe Me
Taking someone seriously who has something you cannot understand perhaps because you could not imagine, or have not experienced, what they are going through can be a difficult task. In some says, I find this to be one of the most difficult hurdles people face living with a complex chronic health condition. While this is inherently a social and medical experience it is crucially a legal one. Legal scholar Doran Dorfman (and others) have described this stigma as a “disability con” where people who use disability accommodations feel others question their disability, especially when it may be less visible, making people look “suspicious.”
This is a widely circulated myth. During the nearly five years I worked as a research associate in the General Medicine Clinic at the Old Cook County Hospital, I would hear people repeat again and again that people were there to get disability coverage, and were not truly “sick” or deserving of coverage. I worked primarily with very low income Mexican immigrant, mostly women. The depth of pain these women carried, and the ways in which they persevered in spite of adversity was remarkable; it was also an extraordinary violation of their humanity. When I spent hours listening to women’s stories, I realized that the suffering they carried with them into the clinical space was more profound that any one trauma, diagnosis, or throbbing pain. Their chronicity was imbued with the harrowing experiences they carried with them in work, marriage, migration, parenting, and caring for others. What I found shocking was that after sharing their stories with me, so many women grabbed my hand and said something like, “Thank you for listening to me.” Over time, I realized how rarely the women I spoke to were consulted, or perhaps believed.
Jury Duty
As summer of 2024 wrapped up, I was called for jury duty. It was a civil case—one where the plaintiff was injured while driving a county bus and was appealing a worker compensation decision that denied her coverage of medical fees. The plaintiff had worked for years as a corrections officer and had several accidents that caused her back to ache, shoulder to stiffen, and nerves to cause tenderness. She was a low income sixty-something Black mother residing in a rural county in Maryland and driving a bus in a bustling DC suburb. She left the corrections department because after more than three decades, she said on the stand that she wanted, “something different.” It was soon clear that she’d been in several altercations with clients in her work in corrections, causing significant lower back pain from sciatica. The County suggested that because she had pain from her previous job, the small infraction in the bus accident certainly couldn’t be the root of her current suffering.
I was struck by a deposition from the plaintiff’s doctor. Dr. Y spent 45 minutes explaining the biology of sciatic pain, deciphering movement and duress according to an MRI. Near the end of an exhausting cross-examination, where the prosecutor homed in on minor differences between two MRIs spaced a decade apart, his eyes lingered down to the papers on this desk. He looked up at the lawyer and stated something like, “well, pain is subjective. Even if we don’t see something on the MRI, a patient can be in pain that is debilitating.” I could barely contain my shock when this doctor concluded, after hours of trying to prove something visible and measurable determined her pain, that we in fact may never know how much pain she was in.
The jury voted in favor of the plaintiff. In deliberation, I suggested, “why don’t we just believe her?” Many others agreed—that her pain was pre-existing but the accident—as minor as it was—exacerbated her suffering. This was after a certain amount of deliberation about what it means to believe people’s pain. I wonder what the conversation might have been like if I had not spent the last several years listening to people’s stories about the depth of pain in their heads, necks, backs, muscles, stomachs, tissues, and elsewhere that stayed with them. None of this pain was visible to others. How many plaintiffs are dismissed because it’s unclear if their pain was “severe” enough to cause pain that is verifiable?
The Problem of Verifiability
The concept of disability is difficult for many people who become ill with an unverifiable health condition. This is in part because the lack of verifiability cultivates an unease about the permanence of their condition. Dorfman told me, “A struggle for Long Covid is for people to be identified as disabled. People are reluctant to be called disabled because a person’s identity really affects how they see themselves and interact with the law. There are procedures for them to gain legal protections or legal benefits.” He went on to explain, “I think there is reluctance from Long Covid patients to consider themselves disabled, or to consider that their conditions are not temporary.” This is particularly salient for people who developed Long Covid during the first two years of the pandemic and remain mildly to severely disabled today.
Activism around Long Covid disability crucially challenges prevailing notions of what is disability and what qualifies someone to be disabled. This has been fueled by what Alice Wong has called “disabled outrage,” when Long Haulers feel gaslit by family, friends, and public figures both at home and in the world. These experiences were shared by everyone I spoke to. For instance, Karen Bishop, a single mom who launched the Covid-19 Long Hauler Advocacy Project in June 2020 told me, “There's a lot of family members who ask, What's wrong with you? Because it's not visible to them.” The intimacies people have developed through these digital networks are bound together in a particular time, space, and understanding of what they lived through, how they struggled for recognition, and in what ways they need to advocate to access care.