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Living With An Invisible Disability

Written by
Madison Marvin
and
and
May 23, 2023
Living With An Invisible Disability
via Sabeel Ahammed on Pexels

A disability is defined as a limitation or impairment, either physical or mental, which makes it more difficult for an individual to do certain activities (activity limitation), or interferes with their ability to interact with the world around them (participation restrictions). There are both visible and invisible forms of disability, which can impact the way a person is able to participate in society. It does not mean, however, that someone diagnosed with a disability is unable to live a rich, fulfilling life. It simply means that they may need different accommodations and supports, while still respecting the person’s individual autonomy. I was officially diagnosed with an invisible disability at 17 years old—with chronic, debilitating migraines that have plagued me since age eight. It was a relief to get the diagnosis, but it was also a label that felt defining to my identity. It felt restricting; it felt freeing. It felt restricting due to the way a diagnosed disability made me a person with a disability. It felt freeing to finally have an official diagnosis for what I’d been experiencing for almost half my life. It was a contradictory dichotomy that I still struggle with to this day. Still, getting the diagnosis changed a big part of my life, as it opened access to accommodations and support that had previously been closed to me. 

Getting diagnosed and getting access to accommodations was a long and difficult road, but one that was worth it because it helped me regain a sense of identity and independence. On top of my chronic migraines, I was also diagnosed with clinical depression and anxiety. Mental health is all too often stigmatized in our society, and as another form of an invisible disability, it does not have a “one size fits all” form for accommodations. Invisible disabilities can, at times, be easier to manage within society, as navigating with a disability that is unseen means that the stigma around disability may not (though still can) follow an individual. Yet managing an invisible disability can also be difficult when it comes to receiving compassion or accommodations, as the disability is not recognized as needing such things. There is a secrecy to invisible disabilities, a sense of privacy that is afforded, but not at all times a luxury. 

There are many different types of invisible disabilities. The following are examples of  invisible disabilities: learning differences, deafness, autism, prosthetics, Traumatic Brain Injury (T.B.I.), mental health disabilities, bipolar disorder, diabetes, A.D.D./A.D.H.D., fibromyalgia, arthritis, Alzheimer’s, anxiety, sleep disorder, Crohn’s disease, post-traumatic stress disorder, epilepsy, multiple sclerosis, and cystic fibrosis. But truly, unless it is disclosed by the individual, there can be no certainty as to whether or not a person has an invisible disability. And this is assuming that the individual knows themselves. Due to this issue of disclosure, knowing the exact number of people who have invisible disabilities is near impossible to track. There can be rough approximations of course, but this doesn't even account for those individuals who do not view themselves as someone with a disability, invisible or not. Chronic medical conditions are also a form of invisible disability, but again, may not be viewed as such by the individual or by outsiders. 

As someone who suffers from a chronic medical condition that is invisible to others, I often felt like I didn’t have a “real” disability. I wasn’t in a wheelchair, or needed an assistive animal (at the time). And so I often felt like others had it worse than me, therefore I shouldn't complain or seek support. I felt like I didn’t truly belong within the disabled community. I felt like I was on the outside looking in, neither a fully able-bodied individual, nor someone with a visible disability that would allow me to access support. When I would have a migraine attack that would leave me bedridden for hours, if not days, I was often told that I was being dramatic, as if I were a Victorian woman being diagnosed with hysteria. I was offered all kinds of advice for how to “cure” me. Drinking water. Going for a walk. Avoiding salt. Having more salt. Hot compress, cold compress, tepid compress. Massage therapy (that I did enjoy). Acupuncture (that I did not enjoy). Then of course drugs, drugs, drugs. Short of giving me straight-up morphine, I was leaving every doctor's appointment with a new pill bottle in hand. And I was lucky. Eventually I found a medication that helped to prevent my migraines, lessening them to a degree where I could almost function normally. Still, my disability followed me everywhere I went, where one bad day (or week) could send me to the hospital. And now, because my migraines were less frequent, when they did attack, it was a sneak attack. And because it would happen so quickly, without warning, I could be in public and then suddenly on the floor sobbing from pain. This of course would garner odd looks, stares, and avoidance. Or on the flip side, consoling sympathies that felt too cloying to be sincere. To be either ostracized or pitied, both were not reactions I wanted. So I isolated myself. I withdrew into my depression and allowed my anxieties to take over. This gave way for my migraines to take over my life. 

After over a decade of living with an invisible disability, I’ve learned that the way invisible disabilities are viewed differs greatly on people's understanding of the disability itself. Those who have had family members who also suffered from migraines would sometimes be more sympathetic. On the other hand, those who had headaches but not migraines would scoff at me, telling me that their headaches were manageable, so why weren’t mine? This lack of understanding was the driving reason for my retreat from expressing my disability. That is why compassion, education, and patience are crucial to understanding and learning to accommodate individuals, not just with invisible or visible disabilities, but all people. It is important to be aware of how we treat those different from ourselves; how we act towards someone having a seizure or in a wheelchair, or someone who cannot get out of bed due to chronic illness or depression. The stigma around accessing and utilizing accommodations is also one that I, among other individuals with invisible disabilities, must navigate. A person may not question someone in a wheelchair needing to use a ramp (though of course, there are still barriers to visible disabilities as well, such as if a person who uses a wheelchair only needs it some of the time, they may be questioned when they stand or move beyond the use of their wheelchair), but a person with say, a sensitivity to fluorescent lighting due to being overstimulated, may be mocked or ostracized due to their accommodation. 

On days when my migraines are manageable enough for me to still navigate the day, I am extra sensitive to lights, sounds, smells, and people. For me, this means avoiding heavy scents, bright fluorescent lights, and loud, crowded areas. To others, this may just look like someone who is simply “too sensitive.” These barriers would often lead me to avoid certain places with for instance, bright lighting. Unfortunately, hospitals are notorious places for those bright fluorescent lights and loud, crowded areas. Of course, avoiding a hospital when I’ve been in bed for three days with a migraine was not exactly conducive to my recovery. These barriers were as impactful to me and my disability, as a lack of wheelchair access or closed captioning. And while the Accessible Canada Act (ACA) works to create a “barrier-free” Canada, knowing and being aware of what barriers exist means listening to and creating a space that focuses on those with disabilities that may not be visible. The ACA works to remove barriers and create accessibility in seven key areas: employment, the built environment, information and communication technologies (ICT), communication other than ICT, the design and delivery of programs and services, the procurement of goods, services and facilities, and transportation. More information can be found here

There is also the matter of fitting a stereotype of what a person with a disability looks like. Someone who is young, or who looks healthy, may be accused of faking their disability for attention, or for being lazy and “milking the system.” Women who are perceived as young or attractive may be told that they are “too pretty” to have a disability. This can come in the form of doctors or other medical professionals dismaying concerns of those with invisible disabilities. It took many years for me to get my disability recognized, and even with it medically recognized, it is still oftentimes questioned or dismissed. People of Colour are also more likely to have their concerns trivialized, and this stems from a long history of racism and colonialism that has historically focussed on Western medicine and diagnoses. Being a young Woman of Colour meant that my invisible disability was extra invisible, like a ghost trapped behind glass. As a young woman, I was being dramatic, and as a Person of Colour, medical standards were not designed for me to meet. As someone with an invisible disability, it was as if I myself was invisible. Invisible to able-bodied individuals who did not or could not acknowledge and understand my struggles. And invisible to the disabled community, whose struggles varied greatly from my own. 

Invisible disability lends itself to a different struggle for acceptance in society than visible disabilities. Individuals with an invisible disability must fight to have their disability seen, and their challenges acknowledged and accommodated. The visibility or invisibility of a disability is not a marker for the severity of the disability itself, nor is there a standard for how a person with a disability should live with said disability. That is why all people, regardless of whether or not the challenges they face are recognizable to us, must be treated with a level of care and respect—because when invisible disabilities are recognized and accommodated, they shed light on parts of our society that are lacking. All individuals should be able to take time to focus on their health and wellbeing, both physical and mental. Fluorescent lighting can be hard on everyone's eyes, not just those with a sensitivity to light. Loud, crowded spaces can be overwhelming for anyone, and offering a seat to someone is always a kind thing to do. When we learn to accommodate and understand those with invisible disabilities and visible disabilities, we create a society that is overall more understanding and accepting. 

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What’s a Rich Text element?

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How to customize formatting for each rich text

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