They tell me I look so healthy. They tell me I’m just so young. They just cannot believe it. They ask me if I’m really sick, like am I really sure? They ask me if I’ve actually received a diagnosis. They tell me it’s in my head, that it’s psychosomatic. They tell me it’s part of being a woman.
There are so many things people tell me about my own body. If they’re not telling me, they’re second-guessing the information and descriptions I share.
Me disclosing an illness or disability that is invisible, which is to say it is not observable or evident in any readily apparent sense, often leads to these kinds of reactions. Without the ability to observe my condition, many people question or refuse to believe its validity.
Aside from any symptoms, the reality of living with an invisible condition is that people — doctors, family, friends, professors, coworkers and so on — simply won’t believe you. They will label you as overdramatic, tell you that you’re just lazy or call you a liar.
LSA senior Cheyanne Killin, who has multiple chronic illnesses stemming from a rare genetic connective tissue disorder called hypermobile Ehlers-Danlos Syndrome (hEDS), shared her experience with this reality in an email to The Michigan Daily.
“Because I do not look visibly disabled, many people often assume that I’m not actually sick, or, worse, that I’m actually only mildly sick and exaggerating my conditions for personal gain and/or malicious intent,” Killin wrote.
In medical settings, this kind of disbelief can have extreme consequences. Proper diagnosis and treatment are predicated by a doctor taking their patient’s concerns and description of symptoms seriously. When they don’t, patients can suffer unnecessarily.
It is easier for a doctor’s unconscious biases to play a greater role in their evaluation and course of treatment, particularly when conditions are not visible to a doctor, which is the case for 96% of the nearly 133 million Americans with at least one chronic illness. In this way, a doctor’s biases about one’s identities can stand in the way of proper treatment.
Doctors are less likely to believe and properly treat women’s pain than men’s. Doctors also undertreat Black Americans’ pain relative to white Americans. Black women in particular are harmed by doctors who dismiss their concerns and improperly treat them: ProPublica reports that “a black woman is 22 percent more likely to die from heart disease than a white woman, 71 percent more likely to perish from cervical cancer, but 243 percent more likely to die from pregnancy- or childbirth-related causes.” Doctors’ bias against fat people and queer people also leads to worse health outcomes.
Killin has felt this acutely when treated by male physicians.
“I was often told that I was just anxious, stressed, or pregnant,” Killin wrote. “If those were negated, like a negative pregnancy test, I was just shown the door without options or treatment. I’ve been sick since October 2017, and I am just now finding out exactly what is going on with my body.”
For my own primary condition endometriosis, patients typically face a diagnostic delay of seven to 10 years from the onset of disease. In my case, a doctor misdiagnosed me with appendicitis — for which I underwent an appendectomy — seven years before I received my proper diagnosis of endo. For those seven years, my pain was untreated and the progression of the disease continued.
While part of this diagnostic delay is due to doctors’ lack of training on conditions that are traditionally associated with the female reproductive system, it is also certainly caused in part by doctors who dismiss their patient’s pain as “part of being a woman.”
Art & Design senior Anna DeLuca, who has endometriosis and chronic migraines, shared a similar experience in trying to receive a proper diagnosis and having doctors dismiss her pain as a woman.
“Especially if you initially go in for painful periods, you are often dismissed because you know, periods are supposed to be painful or whatever,” she told me in a Zoom interview.
DeLuca described the impact this dismissal had on her.
“And then you’re sort of hit with that wall and then you can’t say anything else,”DeLuca said. “When you are immediately dismissed I shut down, I feel like I sort of I can’t say anything else because you know they’re not going to listen and so, then you try it again with another doctor and you get the same experience.”
In addition to complicating diagnosis and treatment in medical contexts, the pervasiveness of disbelief of invisible conditions affects issues of access to resources for chronically ill and disabled people, including government benefits and accommodations at school or work. At the University of Michigan, the laborious process required to prove a need for accommodations through the Services for Students with Disabilities office can leave a lot of students out.
DeLuca explained how the form SSD requires to request accommodations is “so long” and requires that your doctor complete most of it. When DeLuca needed to renew her request with SSD before her second year, she was uninsured, so the possibility that her doctor might charge her for filling out the form meant she didn’t feel like she could request accommodations through SSD.
“I couldn’t (get the form completed) in time, and at that point, I sort of just looked at the reality in front of me,” Deluca said. “I felt and still feel like this is not for me. They did not mean me when they said disabled.”
In addition to an arduous process to prove one’s disability status, internalized ableism about who and what counts as a disability can lead to feelings of unworthiness when it comes to seeking accommodations.
Writer and journalist s.e. smith wrote about not feeling “‘disabled enough’ because there was nothing outwardly wrong,” which ultimately meant smith felt unable to ask for accommodations.
The issue of who “counts” as disabled has come into sharp focus with the distribution of COVID-19 vaccines. Across the United States, vaccine eligibility has been structured in phases with the most vulnerable receiving the highest priority to receive a vaccine. When people with underlying health conditions became eligible for the vaccine, young people with invisible conditions subsequently faced invasive questions about why they qualify for the vaccine. Their underlying condition is not visible, and so others, often able-bodied people, feel entitled to know their personal health information as some sort of justification.
Even within the disability community itself, evidence (or the lack thereof) of an illness or disability can create tension.
“Some call it the hierarchy of disability; the complex calculus of who is ‘more disabled’ that some people seem to enjoy engaging in,” smith explained. “Those with very evident disabilities are at the top of this hierarchy, while those who can pass as nondisabled are somewhere toward the bottom.”
Ann Heffernan, an LSA collegiate fellow in the Department of Political Science, teaches a course called “Disability: A Democratic Dilemma.” She spoke to me over Zoom about the effort to include different types of disabilities, such as chronic conditions and mental health conditions, within the community.
“The initial disability studies and disability rights movement tended to privilege visible disabilities, and I think it’s only recently — as in the last twenty or thirty years — that conditions that are disabling that may have varying visibility have become part of the analysis of what we mean when we talk about disabilities,” Heffernan said.
While this historical privilege still plays into our conceptions of disability today, it is also important to acknowledge that there is a different and important kind of privilege accorded to those with non-evident disabilities.
With disabilities that are evident, stigma is pervasive. Heffernan has cerebral palsy and spoke about times in her life when she has felt “pressure to not look so disabled.”
For those of us with nonapparent conditions, we can mostly move through the world with the ability to pick and choose who, how and when we disclose our status/conditions. This is advantageous simply for the sake of privacy, but since disclosure of disability status can affect job outcomes and relationships, it is also a privilege with huge consequences.
Recognizing this privilege, Killin noted, “If I’m in an ableist environment (even though it’ll be painful), I carry the privilege of being able to ‘pretend’ that I’m able-bodied. I can present research, meet professors, go to job interviews, etc., with the option of disclosing my disability or not.”
The reason these privileges exist is not a hierarchy created or perpetuated by disabled people. They are created by ableism in our culture that advantages being able to “pass” as able-bodied. It is the same ableism that questions people’s lived experiences with chronic illnesses and disabilities just because they aren’t immediately observable. Ultimately, this problem will not be solved if ableism continues to be perpetuated, mostly by able-bodied people.
At the end of my interview with DeLuca, I asked her what she wishes able-bodied people knew about her experience. “I wish people had respect for situations or perspectives that they do not know anything about, and that can be said for so many different identities,” DeLuca responded. “It’s just sort of that moment of like, I just want to exist peacefully as a disabled person, but I cannot, that is not an option.”
After a moment of silent contemplation, she went on, “I just want the basic respect to not have to explain myself every day for you to validate me … I want people to have that perspective of even if you are frustrated that I need a specific thing, I am infinitely more affected by this. And I think that kind of just comes down for people to understand that this is not about them, this is about me.”
Statement Deputy Editor Marisa Wright can be reached at marisadw@umich.edu.