The Mighty Logo

Why Identifying as Disabled Is a Complex and Personal Journey

The most helpful emails in health
Browse our free newsletters

Unfortunately, becoming disabled is not as easy as someone coming along, handing you an accessible parking pass, and sending you on your way. Becoming disabled is a complex, deeply personal journey that rarely has one tipping point. For chronic, complex, and mental illnesses, even with diagnoses — for those of us privileged enough to have access — you’re usually never told you’re disabled. You’re told you have ADHD, PTSD, fibromyalgia, JIA — but no doctor comes along and says you are disabled. (Take that, medical model.) I hadn’t really considered how I became disabled until now.

I assumed I began identifying as disabled when I was diagnosed with juvenile idiopathic arthritis at 16, but that’s not true. I only started considering myself diagnosed a year and a bit later. And as I thought about it, my whole disability experience unraveled to show me that I was disabled long before that JIA diagnosis, or any diagnosis for that matter. I just never knew enough about disability to consider myself disabled, and I held a lot (a lot!) of internalized ableism. So, let’s unravel my disability experience together.

I was a deeply anxious kid. While I still did well in school and with others, I was always feeling sick and wanting to stay home. Then, I was a deeply in pain kid, and my above average height at the time made “growing pains” an easy excuse for doctors to dismiss me (shout out to the arthritis pals, who all went through the exact same thing.) I was always coming down with something and never felt as healthy as my peers seemed to be.

At age 11, I was diagnosed with generalized anxiety disorder and depression. Looking back, it seems strange I knew how to ask for help so young. I deleted the part where I wrote that I didn’t feel shame — I absolutely did, and hid my diagnoses and medication from my family aside from my mom for years. (Shout out to Mother Fox!) At 11, my anxiety and depression kept me in bed and riddled my attendance — but I didn’t consider myself disabled. At that time, I don’t believe I had any real understanding of what disability meant, besides wheelchairs and the “special ed” kids we would volunteer with.

At age 13, my anxiety and depression were joined by disordered eating. Besties, I know. It was rough. And it was hard to beat. And it came back a few times. And I won’t rule out another relapse. And at age 13, with anxiety and depression and disordered eating that made it hard to go to school at all, I still didn’t consider myself disabled. In fact, I probably considered myself too cool for it — consider this your daily reminder to condemn 2014 Tumblr and its current Instagram-fast fashion renaissance from hell.

At age 14, my chronic pain and constant illnesses began to accelerate, and teachers began to hate me for my poor attendance. My peers would make fun of me when I returned after multiple days off, and someone gifted me a copy of Ferris Bueller. Maybe I played it off like I was ditching, but I was in pain, sick, and confused. But I still didn’t consider myself disabled.

At age 15, after becoming exceptionally bad at math (a new development), I went to my guidance counselor and told her I was going to drop out – a cry for help if I’ve ever heard one. She said, “Numerically, your grades are too high to fail this semester.” I swear, guidance counselors have to make a commission every time they get a kid to drop out. Fortunately, I went back to the doctor who had diagnosed my anxiety disorder and depression, and I was then diagnosed with ADHD. ADHD was never really explained to me (is anything ever in our overwhelmed healthcare system?), but a medication finally helping me cope with an illness was a significant tipping point in my disability journey. I was able to get my mind back on track, and slowly build up coping skills to function in a way that suited my life again.

At age 15, my PTSD began. This is the one thing I still struggle discussing, and the one disability whose full history I’m going to mostly keep to myself for now. While I wouldn’t be properly diagnosed until age 17, I had never been more disabled in my life — and yet, I still did not consider myself disabled. (One day we’ll talk about it folks, one day.)

At age 16, I was diagnosed with juvenile idiopathic arthritis. You’re probably now thinking, “This is it, she’s disabled now, we’ve done it!” If this is you, thank you for the emotional involvement in this retelling, but we aren’t quite there yet. While something deeply transformative happened in that doctor’s office when the rheumatologist poked at all my joints and I knew my life was about to be significantly altered, I still didn’t consider myself disabled. Instead, I considered myself chronically ill, which is a differentiation I still have to explore and learn more about.

Disclaimer: you are valid if you identify as chronically ill. You are valid if you identify as disabled. You are valid if you identify as both. There is no finite amount of validation here — it’s not pie.

At age 17, I nearly dropped out of school (again). My body was practically falling apart, and I just couldn’t keep living my life how I was; I couldn’t keep up. I was on near-bedrest for weeks. After that, I couldn’t return to school. Instead, I ended up meeting an itinerant teacher once a week, teaching myself a few courses, and petting a lot of therapy dogs at the public library I knowingly arranged to meet my teacher at — disability excellence, folks. I was also so lucky to have understanding, albeit pretty confused and concerned, teachers who went out of their way to accommodate me. My band teacher let me show up once a week in the mornings, and I went to a literature studies course right after those band practices. And as I was negotiating all of these accommodations and explaining my situation to those involved, I began to start using disability in my vocabulary. Soon enough, I was calling myself disabled. Disabled, disabled, disabled.

And for good measure, at age 18, I transferred into adult care and was diagnosed with fibromyalgia. I did not have the heart to leave fibro out of here, narrative flow be damned.

So, there you have it. Six years after the first diagnosis, I finally identified as disabled. Some people will have their personal preferences to not identify this way — which is totally cool — but for me, it opened doors. Most people understand that they don’t understand disability. They will (sometimes) listen to your experiences and what you need. (Or maybe they’re just nosy. Whatever works.) When you identify as disabled, an even wider community with shared experiences opens up. More resources are available. More accommodations are considered. More things become possible.

A lot of people ask me if I think they’re disabled. And while it is kinda weird for me (I don’t believe myself to be some kind of disability fairy godmother), I understand where they’re coming from. Disability is confusing. And overwhelming. And personal. So, sometimes it’s easier to seek external validation of your disability identity than to find that validation in yourself.

For anyone out there wondering if they’re disabled, or if they’re disabled enough — that’s your call. Sorry. Only you know how your disability, or illness, or disorder, impacts your life. No one else out there can make that call for you — and no one else out there gets to judge who is and who is not disabled (in the social sense, please don’t go commit tax fraud or something).

The takeaway here is that there is no one way to become disabled. There is no set timeline or list of requirements you have to meet. If you’re wondering if you’re disabled, I would tell you that you probably are, but that would reinforce my alleged disability fairy godmother status. Instead, I’ll ask you this: do you feel disabled? Do you feel as though your ability to function is negatively impacted by your health? And how would you feel if you did identify as disabled? If you felt relief, closure, or peace, it might be time to look at your own disability journey. Depending on how that goes, either try again later, or welcome to the club. I’ll see you around.

Getty image by Marco Bottigelli.

Originally published: May 18, 2022
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home