Coping | Daily Life | Disability | IBD | Work
When I saw the email from our Girls With Guts Blogging Coordinator about October being “Disability Employment Awareness Month,” dread immediately bubbled up in the pit of my stomach. Talking about how my multiple disabilities have affected my career and employment is on my top five list of “things I don’t talk about.” But, I can’t deny that employment has been at the forefront of my mind throughout my chronic illness journey.
In August of 2021, I finished my Masters of Social Work, and found myself devastated by the reality that I am unable to work full-time due to my long list of chronic physical and mental illnesses. Sitting on Zoom with my Vocational Rehabilitation Counselor, I felt simultaneously validated and heartbroken when he said, “I absolutely agree with you and your providers that working full-time is not possible with your health right now.”
While I feel fortunate that my Vocational Rehab Counselor gave me logistical and practical support as I searched for a job that would accommodate my disabilities, turning down (or not even applying for) opportunities that I knew would not meet my physical and mental health needs hurt, badly. I felt so discouraged that, when my Masters degree arrived in the mail, I shoved it on a shelf in my cat’s litter box closet, half hoping it would fall into the cat box and get destroyed. It felt more like a relic of who I’d hoped to be than a celebration of my accomplishments.
Eventually, after numerous phone calls with my Vocational Rehab counselor where he cautioned me that the type of job I was looking for may not exist, I found a listing for a Coordinator position at a local non-profit focused on aging and older adults. My pre-chronic illness plan when I started graduate school had been to work within the field of Aging and Disability; the fact that this role would allow me to do that while working remotely with flexible part-time hours was a godsend.
Six months later I am still happily employed in this role, and eternally grateful for the flexibility it has allowed me as I keep up with my medical appointments while adjusting to a new diagnosis (chronic migraine) that has further complicated my daily life. The fact that I’ve been able to continue to learn and use my social work skills in this job adds to my gratitude.
But, along with my gratitude, there is also grief. Grief that finding a job that accommodates my disabilities while still providing professional growth and vital income felt more like winning the lottery than a likely outcome within our society’s employment system, even with all the resources of Vocational Rehab and a masters degree behind me. Grief that working a very part-time job is the absolute max that my body and brain can handle right now, even though I have done everything I possibly can to get my health to a better place. And grief that part-time work doesn’t come with the financial stability of full-time work, and that I am constantly trapped in the exhausting game of “making enough to pay rent while not making too much to lose health benefits” that disabled people know all too well.
All this grief can make it difficult to see my non-chronically ill peers off leading what seem to be exciting careers while I spend much of my day managing unpleasant symptoms, juggling medical appointments, and carefully budgeting my energy to ensure I have enough strength to manage my 2-4 hours a day of work tasks. In a society where people often define themselves by the professional work that they do, figuring out how to define yourself when you can only work 10-15 hours a week feels like a daunting endeavor. Growing up, I never really dreamed much about getting married or having kids–it wasn’t even legal for queer people to get married when I was growing up. I always defined my future by the type of work I would do and the busy career I would have. Accepting that my illnesses have forced me to modify that dream has been deeply painful, more painful for me than many of the other aspects of “chronic illness grief.”
This is usually the point where someone–very well-meaning–steps in to tell me that “you don’t know what the future will bring!” and to “hold on to hope that your health will get better and someday you will be able to work full-time!” To which I usually shrug and say, “maybe.”
I don’t mean to be crass, but I can’t sustain myself (literally or figuratively) on the fleeting hope of what might be someday. After nearly 5 years of invasive medical procedures, Crohn’s flares and complications, multiple additional chronic illness diagnoses, and the exacerbation of my pre-existing Obsessive Compulsive Disorder, I have learned that my survival depends on me finding meaning, joy, and acceptance within the life I’m living now, not the life I might have someday, maybe.
Finding meaning, joy, and acceptance in my life now is a daily challenge. It’s so easy for me to not only compare myself to my non-chronically ill peers, but also to my former healthy self. “I used to be able to work 8 hour days no problem!” I found myself sobbing to my therapist in frustration during a busy week at work recently that became difficult to manage when my doctor ordered some imaging and the use of a labor-intensive medication 4 times a day. To which my therapist gently replied, “No one has limitless capacity, not even you.”
Often, I have to remind my perfectionist brain that I am a human with limits, and that I am not failing for having a life that looks different from people who haven’t faced the medical challenges I’ve faced, and from the past version of myself that hadn’t yet sustained the physical and emotional impacts of Crohn’s disease and other illnesses.
On the days where I want to push myself beyond my capacity and disparage my body for having limits, I try to remind myself that, despite what society says, a meaningful life is possible even when chronic illness affects your ability to work—whether you are working part-time, full-time, or not at all. I connect with peers, family, and friends who are also creating lives within chronic illness and the limitations that come with it. In a society that requires an entire awareness month just to remind people that disabled employees exist, being part of a community of chronically ill people who celebrate each other for the work that we can do–whatever that work looks like–paves the way for finding joy, success, pride, and a strong sense of self and identity. On my hardest days, I find hope in the lives we are creating together.
To learn more about Vocational Rehabilitation Services in the U.S., search “Vocational Rehabilitation, State of [Your State]”
To learn more about working with IBD and/or ostomies, FMLA, and disability disclosure in the workplace check out our career life stages page.
To learn more about Obsessive Compulsive Disorder, visit the International OCD Foundation