Since being diagnosed with Ulcerative Pancolitis almost four years ago, I have been battling the shame that surrounds my symptoms. I often look back at who I was before my diagnosis—not only grieving that version of myself but also feeling ashamed that I can never fully be her again. Before IBD, I was fiercely independent, reliable, spontaneous, perfectionistic, energetic, athletic, social, focused, happy—and, most importantly, healthy. To put it into perspective: I was a straight-A student at a top magnet school in my district with a 4.44 GPA. I was simultaneously taking college classes, volunteering, traveling, going out with friends, exercising, and serving as the Secretary of my high school’s dance production team. Even during my first year of university—despite COVID-19 restrictions—I took 33 credits, earned leadership positions, made the Dean’s List, got straight A’s, moved into my own apartment, worked out consistently, and started two social work internships.
Then, everything changed. After my diagnosis, my life felt like it had been turned upside down—and in many ways, it had. For a couple of years, I had to move back in with my parents because I could no longer care for myself. There were days that I couldn’t brush my own hair or stand long enough to cook a meal or wash my face. If I needed to go to the hospital, I couldn’t even get myself there. I was fully dependent on my family when my IBD was active. That dependency alone filled me with shame. How could a nineteen-year-old not brush her own hair? How could I be so weak? While I managed to continue online school, I had to request disability accommodations from my university. I went from being someone who never asked for help to someone who needed it in nearly every part of her life. I no longer felt like myself. The woman I once was had seemingly vanished, and in her place was someone I didn’t recognize—someone who carried a constant, heavy shame.
Even now, despite being in remission for about two years, that shame hasn’t disappeared. It creeps in every time I’m too fatigued to answer a text or take a phone call—or worse, when I have to cancel plans. In those moments, I don’t just feel like a bad friend, I feel weak. I feel mentally, physically, and emotionally defeated. I question how someone like me, who seemed to once "do it all," can’t even hold a simple conversation anymore. That shame resurfaces every time I walk into my gastroenterologist’s office or sit in the infusion center waiting room. I think to myself, "Why am I here? I am so young, and yet I am sick. I must just be weak." Even when I pick up a stool collection kit at the lab, I look around, paranoid and embarrassed that someone might know what’s in that big, brown paper bag. I also feel ashamed of what I have to do with that kit once I get home. Especially on the days that I sleep late into the afternoon or feel too exhausted to shower, that shame becomes deafening. I can’t even manage basic self-care, and that makes me feel pathetic and exposed.
Unfortunately, I used to feel as though this shame only deepened when I tried to speak up about what I was going through. On a romantic level, I used to be extremely cautious about sharing my IBD with potential partners. This is because I didn’t want to feel embarrassed, and I certainly didn’t want to be rejected because of it. My first partner after my diagnosis knew all about my IBD. We joked about bathroom "duties" constantly—it was part of our daily rhythm. Beneath the humor, though, I knew that he wanted someone different: someone who could be spontaneous, who could have endless energy, who could cook large meals, who could host frequent gatherings, who could clean, who could work out with him, etc. That just wasn’t me anymore. I also knew that he didn’t want to be around if I ever needed to take Prednisone again since I had explained its emotional toll and side effects. Moreover, I knew that he would "never touch" me if I ever had to get an ostomy. So, I tried to be who he wanted—to become the woman I was before IBD—and for a while, I pulled it off. Over time, though, that relationship made me feel unaccepted—for who I was in that moment and for who I might become. It made me feel ashamed to be me—the real me. It intensified the shame I already carried about my illness.
Since then, dating has been rocky. I’ve met a few people who've responded with deep empathy and genuine interest, and for that, I am grateful. I’ve also encountered individuals who shut down any conversation about IBD out of their own discomfort, who incessantly question my fertility or the "quality" of my genes, or who firmly believe that "tooting" in private or using the word "poo" in a sentence would be impolite and inappropriate. For someone who loves deeply and craves a meaningful romantic connection, those reactions cut deep. They make me question and feel ashamed of the kind of partner I am—or could ever be. On a platonic level, things haven’t been easier. When friends or family joke about me "sleeping all day," "always being at home," "always needing the bathroom," "being forgetful," "not being fun," "eating boring foods," or about how my brother "takes better care" of my dog, shame crashes over me like a wave. I genuinely begin to drown in it. It’s one thing to feel shame for not meeting your own expectations—the ones you set when you were healthy. It’s another to feel shame when romantic partners judge you for something you didn’t even choose and cannot control. However, it’s something entirely different, and perhaps even more painful, to feel that shame reinforced by the people you love and value the most. When they unknowingly echo the same critical thoughts that I already battle every day, it doesn’t just hurt—it reinforces my shame and makes me feel weak and unworthy.
This compoundedness and deeply personal nature of this criticism take my shame and embarrassment to an entirely different level. The intensity of shame I’ve felt in these moments mirrors the shame I’ve carried throughout my journey with active IBD symptoms. It mirrors:
The shame I felt needing my loved ones to brush my hair;
The shame I felt crying, begging, and pleading with doctors for answers and relief;
The shame I felt discussing my symptoms with countless medical professionals;
The shame I felt from the burn marks and scars left behind by overusing a heating pad;
The shame I felt experiencing fecal incontinence;
The shame I felt wearing diapers for months;
The shame I felt needing to carry baby wipes, toilet paper, and a change of clothes;
The shame I felt when I could no longer clean myself without help;
The shame I felt asking my gastroenterologist to remove my colon;
The shame I felt when I began to question if life was even worth living;
The shame I felt being bedridden, needing a wheelchair just to get fresh air;
The shame I felt requesting accommodations from my university;
The shame I felt when a doctor asked me why I waited so long to seek help.
Still, I continue to grieve the version of myself I once was, and I wrestle with the shame of not being able to live up to that image again. Feeling stuck in your own body when your mind wants to do so much more is an agonizing experience. I acknowledge that fully. Yet—despite my doubts—those feelings of shame began to fade away as my symptoms have lessened and as I’ve found my voice within the IBD community. I've recently been able to feel pride when comparing the person I once was to the person I am today. No, I may never again be the energetic, healthy "yes woman" I once was. Nevertheless, I wouldn’t have the resilience, empathy, and sense of purpose I now carry if not for IBD. Fighting for your life, navigating a new reality, and battling stigma while the world moves on without you teaches you something profound: you are capable of surviving the unimaginable.
With this new revelation and mindset, I've come to see how my feelings of shame and beliefs of being weak/perceived as weak are rooted in fallacy because:
To cry in front of doctors and explain your symptoms is not shameful—that's strength.
To be vulnerable and advocate for yourself is not shameful—that's courage.
To decline a call, cancel plans, say "no," and set boundaries is not shameful—that's self-respect.
To rest rather than push through the pain is not shameful—that's self-love.
To wear diapers and pack supplies to manage your day is not shameful—that's determination.
To request or actually go through a life-altering surgery is not shameful—that's bravery.
To need and/or ask for help is not shameful—that's survival.
To live in a body that is constantly fighting against you is not shameful—that's perseverance.
To choose life every day, despite IBD's messiness and pain, is not shameful—that's resilience.
Furthermore, I believe with all my heart that talking openly about IBD—the good, the bad, and the ugly—is one of the greatest testaments of one's strength. Whether it's with friends, partners, family, co-workers, medical providers, or strangers, it takes immense courage to be that vulnerable. This is because, in all honesty, there is risk involved. As human beings, our minds can sometimes jump to the worst possible outcomes. When it comes to talking about IBD, there's the risk of being judged, pitied, and misunderstood. There's the risk of "becoming" your diagnosis and of losing relationships or job opportunities due to stigma. These fears are real and valid, and they’re exactly why many IBD patients tread lightly when sharing their stories. As a result, though, we often overlook the best possible outcomes. From experience, I know that talking about your IBD can: help you feel more at home in your own body; help you feel accepted for who you truly are rather than who people want you to be; help you find community; help shine a light on the genuine/empathetic people in your life; help create space in your mind for something more than just survival; help break the stigma; and help pave the way for earlier diagnoses, better treatments, and stronger support systems. Sharing your story doesn’t make you less—it makes you more. Sharing your story makes you more human, more whole, and more you than you had ever thought possible.
Taking all of this into account, I’ve come to recognize how powerful it can be to talk about IBD and share your story. If the worst that can happen is being judged, excluded, misunderstood, or left, then maybe talking about your IBD is a blessing in disguise. I know that speaking openly about my IBD has saved me from dedicating my energy and love to people who didn’t deserve it. If the best that can happen is finding your people, becoming more comfortable with your diagnosis and yourself, getting care faster, and helping to break the stigma, then sharing your story might actually be a superpower. We, as IBD patients, are in a unique position to educate and advocate—not because it’s our responsibility, but because our lived experiences often speak louder than medical textbooks ever could. I wish we lived in a world where everyone understood IBD, where institutions offered protection, and where systems were built to accommodate us. The truth is, though, most people just don’t know where to start. They rely on what they read online or hear in passing. It’s easy to see how misconceptions and stigma grow. If I read online that remission meant "no symptoms and a healthy colon," I probably also wouldn’t have much empathy for someone in remission who still canceled plans or needed extra rest. As someone in remission who is sharing her story, though, I can tell you one thing: that version of the story isn’t quite right. Nothing about IBD is so black-and-white. Everyone’s experience is different, which is why personal storytelling matters so much. Doctors, loved ones, and even other patients learn from us as IBD patients. So many vital conversations—about non-textbook flare symptoms, about “safe foods,” about unspoken medication side effects, and about what remission really looks like—don’t come from medical journals; they come from people with IBD who tell the truth about what it’s actually like. Without these stories, diagnosis and treatment can be delayed, and support systems stay broken. It’s not our job to fix the system, but by speaking up, we might just make it easier for those who come after us. We might even make it easier for ourselves in the future.
For a disease that has made me feel powerless more times than I can count, finding power with or over my diagnosis has been invaluable. Talking about IBD has helped me reclaim my own narrative. People can still judge me, but at least they’re judging something real. If someone can’t handle a story of resilience, that’s on them. No journey of survival is without its dark moments. Most movements worth remembering were forged in hardship.
That said, I don’t want to pretend it’s easy. Even now, I still struggle to talk about my IBD. I just recently began experiencing symptoms of a flare, but I only told my doctor and loved ones after a delay. This was not out of embarrassment, but out of fear—the fear of returning to that time when I felt that I had lost all independence, the fear of being blamed, and the fear of blaming myself. There’s a voice in the back of my mind that whispers, "You should’ve taken better care of yourself. You should've been stronger." And although I know that’s not true, it still stings.
Even with that fear, though, I eventually reached out because I’ve learned what happens when I don’t. I know now that silence doesn’t save me. Hiding doesn’t protect me. Every time I have tried to ignore a symptom or push through for someone else’s comfort, I’ve paid for it tenfold. I've realized that delaying diagnosis and treatment is, quite frankly, not worth anything. So, I’ve started doing the hard thing: I've started telling the truth. I’d rather speak up than wait until things become unmanageable because the truth is, IBD is messy. It’s not just a bathroom disease. It’s not just about inflammation or test results. It’s about what it does to your relationships, your identity, and your sense of safety in your own skin. It’s about mourning the life you thought you would have, and then figuring out how to build a new one—without pretending that the old one didn’t matter. It’s also about power—quiet power. This is the kind of power you reclaim when you speak up, when you stop hiding, and when you say, "Here’s what I’m going through," even if your voice shakes.
I know what it’s like to walk into a doctor’s office, share your story, and be dismissed. I know what it’s like to be lonely in a room full of people who love you. I know how scary it can be to share what you're going through. At the same time, I also know how healing it can be. Talking about your IBD—when you’re ready—can give you strength with the diagnosis and over the stigma. That kind of power is slow and sacred. It doesn’t always feel good, but it builds something stronger than "perfection" and "control." It builds truth. When I tell my story, I don’t just feel more seen. I also make space for other people to show up with their stories. Sometimes, your courage can be the reason someone else finds theirs and feels less ashamed. The more we speak, the less shame survives. The more we share the parts of IBD that don’t have tidy endings, the more human this disease becomes rather than being a punchline of a joke or a pity project. There are days that I still feel afraid—afraid of being judged, misunderstood, and left behind. Even so, I’m more afraid of going through this alone. If my story can be a hand reaching out to someone else in the dark, then I’ll keep telling it—again and again. At the end of the day, I truly believe that the only way out is through, and for me, the "through" begins with sharing my story.
