Disability is a Reinvestment, Not a Defeat

Although I resisted it at first -- and wrestled with what it said about my worth as a person -- going on disability has helped me become healthier, happier, and more fulfilled than I was when I was working.

Oct. 5, 2020 | 5 min read
Aubrey Kostelec

Transitioning from a lifelong journey of physical disability to a new chapter of social and financial disability is not how many people plan to spend their early twenties. Even those of us with lifelong progressive illnesses rarely know how long -- if at all -- we will be able to work before health needs outweigh capabilities. Regardless of how or when, having CF means there's a good chance you won't have many “real-life” examples of disabled young people to relate to. Reworking plans, dreams, social life, self-esteem, budgets, internalized and systemic ableism, and so much more, all by yourself, can be isolating.

I was somewhat ashamed when I first became disabled at 21. Meeting people was always anxiety-inducing because they almost always asked the cursed question: “What do you do?” What should I say? “Nothing?” “Rest, eat, and do breathing treatments?” Or the ultimate blunt bummer of a response: “Actually, I'm disabled?” What if they don't believe I can be disabled due to my appearance and age? I can't say I'd blame them, but it never feels good. Or what if they think less of me because I survive off of taxpayers' money? Should I just lie and pretend I work so I don't have to talk about this for the tenth time today?

But here's the thing: “Disabled” is not a bad word, and it's also not the bummer it sounds like at first. Disability, in the social/legal sense, gave me my life back.

At 21, working 40 hours a week at a call center, I was doing very poorly. I was significantly underweight with very low lung function and had little to no exercise tolerance whatsoever. I was sick more often than I was well, and I was broke and never able to use my vacation time due to all the work I had to miss. I was asleep most of my non-working hours, leaving me with little time to do extra treatments as needed, prepare and eat healthy meals, or exercise, let alone do things I enjoy or engage in self-care. My physical and mental health were in near-constant critical condition.

When my medical team first brought up disability, I felt defeated. I was exhausted. I was broke and I couldn't go three months without IV antibiotics, and now I had to quit my job?! I was angry, afraid, and fundamentally unimpressed with myself. It felt like walking from a well-lit hallway into a completely dark room. I had no idea what to expect. It felt like I just couldn't catch a break. Little did I know, disability was just the resource I needed to get my health back.


Now, at 24, my lung function has increased significantly. I am at a healthy weight and truly physically fit for the first time in my life due to having the time to truly manage my diet and exercise. I now get a healthy amount of sleep for the first time in my adult life, and I generally only need IVs once or twice a year. My mental health is far from perfect, but I have the time to truly work on it and do things I enjoy; something I seriously lacked when I was splitting my time only between work, treatments, and sleep.

Now that I've settled more comfortably into disability, I can see some things I didn't see before. First of all, I see that the inherent “laziness” that internalized and systemic ableism had made me fear is a complete myth.

I still put effort into achieving things just like a working person does; the difference is the reallocation of that effort and energy. I have reinvested much of that energy into myself and my health, and there is nothing lazy about that. I have seen the fruits of my labor in the forms of feeling better and more energy for self-care and hobbies, both of which are extremely rewarding. I am still a productive person, just in different ways than before and -- frankly -- I'm personally much prouder of the ways I'm productive now than I ever was at work. This reinvestment in myself and the tangible results that came from that choice are what makes me, dare I say it, proud to be disabled.

Another thing I can see now is that comparing my experience in disability to that of others (disabled or not) was always futile at best and damaging at worst. Being unable to work doesn't mean you aren't independent, motivated, active, capable, or productive (although not being any or all of those things, some or all of the time, is not a negative thing either). It certainly doesn't mean that you aren't important, interesting, or ambitious. It simply means that now is your time to find out if and how the definitions of those adjectives have changed for you, and to give yourself the time and patience to figure it out again. Disability is NOT a bad word. For me, it's a truly beautiful thing.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Aubrey is a disabled 24-year-old with cystic fibrosis. She raises awareness about CF, disability, and chronic illness on her Instagram. She values and advocates for rights, respect, and equality for disabled and chronically ill people. Aubrey lives in the state of Washington with her boyfriend and two cats and is a host on two YouTube channels.

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