IBD | Ostomy
For many years, my queer identity scared me. Growing up in an unaccepting area and witnessing constant disgust towards the queer community made me afraid of how I would be treated if people knew about my queerness. I started the long road to self-acceptance when I was in college. My senior year of college, I thought I might finally be ready to come out. And then the 2016 election happened. In a time of such uncertainty, fear, and hatred, I was terrified to do anything that would make me more vulnerable.
After college, I moved to Portland, Oregon. The first few months I lived here, I tried to integrate myself into the queer community. I attended a few coffee hour meet-ups from local organizations and devoted much of my free time (which there was a lot of, given that I was no longer a student and knew almost no one in Oregon) to accepting my identity. I thought I was finally on track to be at peace with myself. And then, just eight months into my life in Portland, I got diagnosed with Crohn’s.
I’ll spare you the long, long saga detailing how the 3.5 years since my diagnosis has gone (spoiler: not well) and just say that the Crohn’s diagnosis was a catalyst for multiple other chronic physical and mental health diagnoses, and my life is now layered in complexity.
For so long, I desperately wanted space to come into my queer identity independently of my IBD. My IBD changed everything about my life: my plans, my hopes, my dreams, my body, my relationships…I felt like I could never make sense of my queer identity with this colossal illness suffocating me. Being naive and stubborn, I decided I would table the issue until I was better. I assumed that my Crohn’s would soon go into perfect remission from drugs that wouldn’t cause any side effects and that I would go on my merry way, free from pain, sickness, and the dehumanizing bureaucracy of the medical system (a system that can be even more overwhelming and terrifying when you are queer). Obviously, that didn’t happen.
In March 2021, just a month shy of my three-year Crohn’s diagnosis anniversary, I finally came out, via a blog I wrote for Girls with Guts on being Queer with Guts. It was only when I accepted that my identity as a chronically ill person is a crucial aspect of my authentic self, and that my queerness cannot be separated from my IBD, that I was able to integrate the parts of myself and start accepting the whole.
Oddly, the reality that I have resisted for so long–that my chronic illness identity impacts my queer identity and vice versa–has been my saving grace. My illnesses have made me investigate my queer identity further and go deeper into understanding myself; my queerness has forced me to think creatively about what is possible within my life with IBD and break free from the rigid binaries that society often follows.
Life with IBD has brought me to the depths of despair so many times for so many reasons over the last few years, not the least of which is the reality that I have had to grieve the life I thought I would have, the life society encouraged me to have, the life I thought I had to have. In my deepest moments of despair, I’ve felt like IBD has demolished all my dreams and ruined my future plans. And it’s true, my IBD has forced me to let go of dreams I had for my career, and give up the foods I eat, the way I socialize, my ability to travel, my financial security, and aspects of my independence. But being queer and learning from other queer folks has taught me that I don’t have to exist in the world in one particular way, or in the way I always thought I would. I can throw out the mold on how life is “supposed to be” and invent my own life that works for me and my illnesses.
Don’t get me wrong, I’m still grieving, and I am often angry about the misery of living with chronic pain and sickness, as well as the challenges that come with being chronically ill in a world that devalues disabled people and makes us fight like hell just to get our basic survival needs met. But my queerness has allowed me to expand how I think about the world, how I think about myself, and how I think about the life I can build while I’m here.
My pre-IBD closeted self thought that I had to figure out my identity, find one rigid label that worked (currently I just use queer as a broad term for my sexuality and gender), and stick with that label for life, the same way I thought I had to go to college, go to graduate school, start a career, and settle into life. Now I understand that I don’t have to live that way. Some people do live that way, and that is the life that fulfills them. I am happy for them, and I respect them. But I have opened myself to the realization that my future doesn’t have to follow the rigid path I thought it did in order for my life to be rich and meaningful. When my IBD brings me to the depths of despair yet again, reminding myself of this saves me from giving up on this sick life.
I wish I could go back and tell young, fearful me that my queerness is nothing to be afraid of (1). That, in fact, exploring and expanding my view of myself and how I exist in the world will be what saves me, again and again.
(1) While I don’t think my queer identity is something to be afraid of, being afraid of hatred and bigotry is a very real and valid fear for many, even more so for chronically ill/disabled members of the LGBTQ+ community. Being safe enough to speak openly about my identity is a privilege.