An estimated 125 million Americans suffer from at least one ‘invisible illness.’ The term is commonly used to describe any health condition that does not make a person visibly impaired, and encompasses everything from rheumatoid arthritis to cancer. Lime Connect, a disabilities charity, estimates that 90% of conditions fall into this category.
Invisible illnesses often open victims up to judgement and stigma, as members of the public see apparently healthy individuals using handicap spaces or getting disability benefits, and condemn them for taking resources away from "people who really need it." Disability advocates have long campaigned for greater understanding of invisible illnesses to prevent this kind of abuse. This is important work. However, too often the term is used as an excuse for ignorance or as a way to dismiss those who do not present symptoms in a "traditional" way. It is time to move away from the concept, or at least change the way it is used.
A visible illness is often one that presents in a way that conforms to stereotypes of disability. Most people associate disability with physical deformities, wheelchairs and abnormal bodies. If these most obvious signs are not present, an individual is presumed to be healthy. But almost all diseases have symptoms that affect the way victims look and act. Those with rheumatoid arthritis move stiffly and struggle to stand up or sit down. Hemophiliacs often have bruising and swelling around the joints. Sufferers of many diseases are perpetually pale, with marks from IVs tracked up and down their arms, and monitors or assistive devices strapped to their bodies.
Given all this, most invisible illnesses should not be described as invisible but might be more accurately compared to eye colour: easy to miss if you’re not looking, but patently obvious if you are. The fact that they are not recognised is the product of a society that pays very little attention to chronic illness. The public cannot be expected to know every symptom of every disease, sure. But given that many seem to feel entitled to judge the functional capacity of individuals receiving disability accommodations, they have a responsibility to recognise the lesser known, but not unobvious ways that medical conditions can present themselves.
This problem has huge intersections with racism and sexism. Public conceptions of diseases are often thought of in the way they present in white males. This means that women or ethnic minorities are far less likely to be recognised as ill. One striking example of this is autism. Boys are four times more likely to be diagnosed with the condition than girls, and for a long time it was assumed to be linked with gender. However, recent studies have found that 86% of the participants in major autism research projects are male, while more inclusive investigations have found that autistic girls present different, but very clear, symptoms. This sort of stereotyping makes treatment inaccessible to already vulnerable people, and in the worst cases sees victims punished for behaviour that is actually symptomatic of an undiagnosed disease.
It is true that a number of diseases are genuinely difficult to detect. Conditions like PCOS, or many early-stage illnesses, cause very few symptoms and minimally affect a person’s appearance or actions. These illnesses may accurately be described as "invisible." However, the idea that people cannot see 90% of diseases is borne of harmful ignorance. The signs are all there. We just need to start looking.
