Invisible Illness, Invisible Me
Gray background, women sitting on the floor, curled with knees to chest, head down. Courtesy: Canva
By Arielle Dance
I don’t know what’s more challenging— being in immense pain at a house party or having strangers stare at me and comment on my lack of engagement. Some people are nice enough to ask if I’m alright, some try to fix me with alcohol that I don’t drink, while others taunt me when I take too long to rise from my place on the couch.
I watch the other, younger, women dancing. So carefree. They don’t have to worry about rationing their spoons for the weekend. I was careless and used all my energy last night at my friend’s wedding– dancing and spinning for hours. So here I am on this couch in someone’s basement– unable to feel my right leg, smelling the remnants of cannabis, feeling sharp pains in my tummy, and still on designated-driver duty. Do other people have to worry about feeling awful at parties? If they do, I can’t tell.
Preconceptions of Disabled People
I imagine that when some people think of a disabled person, they may have instant images and perceptions of the type of people who fall into the category. A person with a disability probably uses an assistive device like a wheelchair, cane, or walker; they may also have difficulty hearing, seeing, or speaking. I highly doubt that people imagine a disabled person looking like me. The misconceptions and unawareness of people who appear non-disabled is an ableist ideal. Humans are all floating through life carrying invisible stories— in my case, those invisible stories are scarred and tattered with surgeries, hospital stays, medications, sleepless nights, and tearful days.
Diversability recognizes that an individual with a visible or invisible disability is defined as someone who has, or considers themselves to have, a long-term, or recurring condition that impacts one or more major activities that others may consider to be a daily function; this definition also includes the perception among others that a disability exists. (source: Lime Connect).
The Americans with Disabilities Act (ADA) defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. People with a disability may include:
people who are blind or partially sighted
people with learning or intellectual disabilities
people who are Deaf or hard of hearing
people with a physical disability
people with long term or chronic illnesses
people with mental health or psychological difficulties
people with neurological differences
people with an acquired brain injury
For us, simply put, disability is diverse. The most important fact is that the majority of disabilities are invisible and people deserve the space to identify as they feel comfortable.
“But You Don’t Look Sick”
For those who roam our society with invisible disabilities, there is an additional layer of assumptions and disbelief we encounter within our families, with medical providers, and amongst those who are unfamiliar with our situations. When a person with invisible disabilities does not outwardly display what is perceived as a disability, yet they request accommodations or empathy, they are often confronted with a common rebuttal, “You don’t look sick.” In some cases, people may believe that statement is a compliment but it comes with underlying ignorance.
In my journey as a person living with endometriosis, adenomyosis, chronic pain, and lasting effects from prior pulmonary embolisms, I have navigated the “but you don’t look sick” politics often. On a day when I am experiencing excruciating pain paired with shortness of breath, I am usually also wearing makeup and my favorite dress. Wearing my favorite color or make up are ways I choose to cope sometimes. Unfortunately, looking decent opens the door for people around me to question my wellness…illness. What the accuser would not know is that the makeup is covering up dark circles under my eyes from not sleeping and the dress is disguising a bloated stomach.
Over time, people with disabilities, invisible or visible, learn to navigate and adjust in order to survive in our communities. For someone with chronic pelvic pain, these adaptations may mean wearing jeans with an elastic waistband to accommodate bloating and pain; for someone with rheumatoid arthritis, it may mean finding the perfect ergonomic chair for their office. Ultimately, the goal is to appear comfortable and find comfort in our surroundings to seem okay enough for those around us.
Make Us Visible
If you’ve read this article and are still wondering what this has to do with you, I urge you to consider the daily experiences of people with disabilities. Imagine what it would be like to appear healthy but really you are masking your discomfort with a fake smile.
When people ask me how they can be a better friend, caregiver, or supporter to someone who lives with invisible or visible disabilities, my answer is simple– give grace and compassion. As humans, we operate with so much judgment and unconscious bias. We are quick to assume someone is lazy or slacking off if they are no longer meeting our expectations or acting the way they used to. Give some grace. Consider that we are all floating through life with some invisible story and concern. Embrace compassion and empathy for your neighbor and consider that they may need your support, not your judgment.
The next time you’re at a social gathering and you see that woman on the couch sipping water instead of wine, resist the urge to comment on her boring choices. Contemplate the possibility that she cannot drink rather than she does not want to. If you are in the store and see someone hunched over in pain or having a challenging time with their groceries, rather than being annoyed by their slow pace or wondering what could be wrong with such a young person, embrace compassion. You may even ask if they need support or give them a warm smile.
We are all able to break the stigma towards invisible disabilities. We all have a chance to be better allies and advocates.
My hope is that the next time you see me, I won’t be invisible.
About the Author:
Arielle Dance is a content writer at Diversability who identifies as a Black, queer woman with disabilities. A Ph.D. in Mind-Body Medicine, Arielle is published on multiple online platforms and has an award winning children’s book, “Dearest One,” that focuses on mindfulness and grief.