Am I Chronically Ill, Disabled, or Both?

Most identities we have are pretty black and white. Some we are given: we are raised with our cultural identities, our race is determined by our genetics, and the language we speak is dependent on where we grew up and the language of our caregivers. Clear lines are also drawn between our acquired identities: musician or not, religious or not, film buff or not. Sure, there's wiggle room-- you can love films and not be a film buff; you can play music as a hobby and not consider yourself a musician. But most identities we know pretty easily if they belong to us or they don't.

Disability isn't like that. At least, not for everyone.

Some people don't question if they're disabled. With some conditions, it's very clear. But what does it mean to be disabled, and what does it mean to be chronically ill?

In addition to exploring how people in these communities find and define these identities, I also want to explore what these identities mean for people with different disabilities and illnesses.

Chronically Ill, Disabled, or Both?

Time for some quick definitions. What is a chronic illness? What is considered a disability? Are any conditions both?

Note as well that some of the examples in the Venn diagram might move based on who is categorizing them.

Chronic illness/diseases are defined by the CDC as "conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both." Some examples are diabetes, heart disease, fibromyalgia, and inflammatory bowel disease, just to name a few.

A disability is defined by the CDC as "any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)." Disabilities affect things like motor skills, speech, vision, hearing, mental health, and communication (among other things). Disabilities you might have heard of include muscular dystrophy, Autism Spectrum Disorders (ASDs), deafness, blindness, and mental illnesses like PTSD.

As you might have noticed, by definition disabilities are also chronic illnesses. It's kind of like how a square is always a rectangle but a rectangle isn't always a square. Some people with chronic illnesses might not consider themselves disabled (though some disabled people might not identify as chronically ill).

We tend to think about disability as something that is assigned to someone when in reality it's an identity that is self-assigned in accordance with what feels right. To add to the confusion, you can be disabled while not being considered disabled in terms of getting benefits.

So… How Do You Know How To Identify?

I’m going to talk about this in terms of my personal experience, and then we’ll look at some other people talking about it.

Me around the time I was diagnosed with fibromyalgia, covered in KT tape which helps reduce pain and prevent injury (often used by athletes, which is ironic in this case).

I’ve been chronically ill my whole life in a literal sense; I was always getting sick growing up. I spent more time with a sinus infection than without. I’ve been chronically ill by the above definition since I was diagnosed with PTSD, but even then I wouldn’t have identified as chronically ill— I would call myself mentally ill.

When I was a sophomore in college, however, I was diagnosed with fibromyalgia. It was this diagnosis— and the others that followed— that led me to discovering the chronic illness community. This term fit me both colloquially and by definition. And it was so comforting to find other people who had the same health issues as me.

But I still wouldn’t call myself disabled. The label didn’t feel like it fit.

So what changed? I caught covid, and I’m a long hauler.

Now I have asthma and I rely on a daily inhaler and a rescue inhaler. I have POTS (postural orthostatic tachycardia syndrome) so I have to monitor my heart rate, take medication, and some days I can’t spend too much time standing up. My fibromyalgia is worse now. My chronic fatigue is worse now.

I don’t doubt now that I’m disabled.

I’d say that but, if I’m being completely honest, a part of me wishes that there was someone out there who could officially tell me “Yes, you can call yourself disabled.” Because my disability is (usually) invisible. Because my most debilitating illness are (mostly) controlled by medication. Because my pain is (unfortunately) just a given at this point.

Because I’ve forgotten what being able-bodied is like, so I forget how different my life used to be.

The reality is, I can barely handle one flight of stairs because of my heart rate and asthma. I can’t stand up for a long period of time or lift heavy things, so I can’t work most jobs. When my fibromyalgia isn’t flaring, I have memory issues that will cause me to forget tasks and details; when my fibromyalgia is flaring, my memory gets five times worse and thinking feels like swimming through honey.

All of this to say: in my experience, I used the label that felt right to me. Some people never have to figure out what label fits them— it’s given to them. Nobody gives you a disability card that confirms your identity. You have to figure it out on your own.

What About Other People’s Experiences?

Jessica Kellgren-Fozard is a fabulous YouTuber, mother, vintage-fashion enthusiast, LGBTQIA+ icon (she’s won an award and everything), and disability advocate. In this video, she explore the ideas of chronic illness and disability through an examination of her own experience coming to terms with her health and by addressing the community at large. Give this a watch for another voice in the conversation.

Some people, like me, identify as both. Sarah Blahovec in this Huffington Post article discusses why she uses both chronic illness and disability as someone with Chron’s Disease. Chron’s Disease is one of those conditions that is by definition both a chronic illness and a disability. This is a great read to learn more about the fragmentation of the disability community that Jessica talked about in her video.

In this blog post on creakyjoints.org, a website for people with arthritis, Rosemary Ainley writes about not knowing if she’s disabled or chronically ill. I think her tactic was brilliant: she made a list of things that do support her being disabled, and a list that don’t. Her answer: sometimes she’s disabled. This is more proof of the grey area, and I think this is a totally legitimate and relatable way to view it.

Food for Thought

Like Jessica and Sarah Blahovec said, the community is pretty splintered and disorganized, so we don’t have a consensus on these terms. In the meantime, we all have to decide their meanings for ourselves.

If you are chronically ill/disabled, which terms do you use and why? Do they change depending on the situation? If you’re able bodied, did you know about the term chronic illness before reading this post? Did this post shift your perception of disability/chronic illness at all?