NEWS OPINION

Op-Ed: Why 'Invisible Disabilities' Are Anything but Invisible

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Rachel Charlton-Dailey (she/they) is a journalist specializing in health and disability. Her work is featured in publications such as Healthline, Huffpost, Metro UK, The Guardian, and Business Insider. Charlton-Dailey often uses their platform to spotlight issues that affect disabled people. Here, they explain how "invisible illness" is a misguided, and even harmful, term.

I’ve spent most of my life in pain. Every morning I wake up and I have to take time to assess how much I’ll be able to do that day.

Is there a migraine on the horizon? My hips/pelvis/knees/ankles feel a little sore; will I be able to walk? Did I get enough sleep last night? My hands hurt; will I be able to type? How does my stomach feel today? Am I able to think properly and then translate these thoughts into proper sentences?  Where will be comfortable enough for my body to work today?


Will I be able to do anything at all, or will I have to just go back to bed?

With a list like this to run through every morning, I find it ridiculous that my disabilities are described as “invisible.”

The term "invisible disability" or "invisible illness" is used to describe any condition that stereotypically doesn’t present in a physical way. It was previously used for chronic illnesses, but in recent years, it has also been expanded to include mental health, gynecological conditions, and neurodiverse conditions.

However, if you live with any of these disabilities yourself, you will know that they are far from invisible and to call them so diminishes them.

There are visible signs of every disability and condition if you pay attention. The sorry truth, however, is that non-disabled people often still subscribe to an outdated view of disability. Many people sadly think that you are only disabled if you have a physical disability and therefore need to use mobility aids (like a walker, cane, or wheelchair), but of course, not all disabled people do. 

How 'Invisible' Conditions Manifest Themselves

I have a host of illnesses and conditions, all of which are classed as "invisible." The full list includes lupus, endometriosis, osteoporosis, rheumatoid arthritis, dyspraxia, migraine, celiac disease, asthma, anxiety, depression and post-traumatic stress disorder (PTSD). Although they all fall into the categories known as invisible illnesses, if you pay attention, they soon make themselves known.

Fatigue is a big part of all of my chronic conditions and often shows up in various ways, such as walking slower, needing to take breaks, and lack of concentration. Another common symptom of chronic conditions is brain fog, where I’ll struggle to think of or remember even the easiest thing. This can make holding a conversation or doing tasks impossible.

"My disabilities are evident in the exhaustion on my face, the aching in my joints, and the extra time it takes me to process simple questions. Whether you choose to see them or not is up to you."

Lupus

Lupus, an autoimmune disease characterized by chronic inflammation, is mostly triggered by heat. This means I can’t really leave the house or do much on hot days. I have to plan my days around the sun like a vampire. I’ve been known to faint if I get too hot. I’m also prone to ulcers in my throat and on the inside of my mouth. These can be really painful and mean I speak with quite a croaky voice a lot of the time. 

Celiac Disease

Celiac disease means that I have to stick to a restrictive wheat and gluten-free diet. This makes dining out very difficult and sometimes impossible. If my food is contaminated, my symptoms range from exhaustion and bloating to diarrhea, no matter where I am. Which unfortunately I’d say is pretty visible, wouldn’t you?

Dyspraxia

Dyspraxia (a developmental coordination disorder) is one condition that I think does present physically, but because there isn’t much awareness of it, people often don’t recognize it. The condition makes me clumsy and my fine motor skills are terrible. The component people know even less about, though, is its neurodivergency. I sometimes struggle to process what people are saying (especially instructions) and misread social situations. I also have unclear speech and sometimes say sentences out of order, so I don’t make sense. 

Arthritis and Osteoporosis

Arthritis and osteoporosis affect my joints and bones, making it hard to type, hold things, and walk. When these conditions get too severe, I use either a cane or a walking frame to help me walk.

Ironically, it’s on the days I need to use aids that non-disabled people suddenly discover I’m disabled. These are my neighbors who see me every day, but they only see my disabilities when I use things that make them more manageable. It was disheartening to find that Instead of being happy I was finding ways to find comfort, these people were always sorry for me.

When you put all of these together, it’s almost insulting that people only view me as disabled when I use a walking aid. It's like they need a big lit-up, flashing sign that says "I’m disabled!" to acknowledge such a big part of who I am.

That’s not to say more physically-presenting disabilities aren’t valid; they of course are. The problem with separating disability into "visible" and "invisible" is you create a hierarchy. Physical, or "visible," conditions get the most attention, acceptance, and research because people can easily associate them with some sort of image of disability. Meanwhile, the invisible ones remain invisible, and are less likely to be believed.

Events such as “Invisible Disabilities Awareness Week” leave me feeling uneasy because I’m already aware of my illnesses each and every day—and they’re far from invisible. My disabilities are evident in the exhaustion on my face, the aching in my joints, and the extra time it takes me to process simple questions. Whether you choose to see them or not is up to you.

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  1. Warren RJ. The impact of invisible illness and invisible disability on music therapy practica students. Journal of Music Therapy. 2020;57(2):193-218. doi. 10.1093/jmt/thaa004. Published May, 2020.