IBD and Eating Disorders: Control, Fear, and Survival

by Michelle Garber (California, U.S.A.)

An empty pink-orange plate with a knife and fork on a white background. The plate and utensils have some food remnants left on them, as though they were recently used.

Content Warning: this article discusses eating disorders and topics such as food restriction, binge eating, and body dysmorphia.

For as long as I can remember, food has never been just food. It has been comfort, control, fear, shame, and even the sole measure of my worth. I began struggling with disordered eating as a child, long before I knew anything about Inflammatory Bowel Disease (IBD) or ulcerative colitis—the chronic illness that would later reshape my relationship with my body all over again.

My earliest battle was with anorexia nervosa. I was only around twelve when I began restricting food, counting every calorie, and chasing the illusion of control that came with watching the number on the scale drop. Almost no one knew. The secrecy was part of the sickness—the quiet shame that thrived in silence. It felt safer that way. In a strange way, that shame felt familiar when I was later diagnosed with IBD. Both conditions carried a stigma. Anorexia was whispered about in terms of vanity and control, and conversations about IBD were avoided altogether because they involved the "uncomfortable" topics of bowels, bathrooms, and bodies.

By my senior year of high school, I had relapsed in terms of my anorexia. With prom and graduation approaching, I wanted to "feel confident" in my own skin, but my desire for control quickly turned into obsession again. I convinced myself that going vegan and gluten-free would "clear my acne" and "make me healthier." When it didn't, though, I continued anyway. I continued because I had found something else: the rush of watching the scale drop again. I told myself that it was about health, but deep down, it was about control, perfection, and fear.

When COVID hit, prom and graduation vanished, but my eating disorder didn't. Even though I eventually abandoned the vegan diet, my restriction continued. My hair began falling out in clumps. I was so weak that I needed to be pushed in a wheelchair on family walks and through grocery store aisles. Still, I clung to denial, blaming my fatigue and hair loss on my thyroid. I wasn't ready to admit that I was sick again—not from a medical condition, but from the same mental illness I thought I had conquered.

The human body can only endure starvation for so long before it rebels. Mine did—violently. The pendulum swung from restriction to bingeing. Binge eating disorder involves recurring episodes of eating large amounts of food rapidly, often to the point of physical discomfort, accompanied by feelings of loss of control and guilt afterward.

That was my reality. I gained weight rapidly and felt completely out of control. If anorexia gave me a false sense of control over my life, binge eating disorder stripped it away. I swung from one extreme to another, and both made me miserable. When the weight gain triggered the same familiar self-loathing, I spiraled right back into an anorexia relapse again—a vicious cycle of control and chaos that consumed years of my life.

Eventually, my body began to fail. My heart rate slowed to dangerously low levels. For the first time, I allowed myself to admit the truth: I did not want to die. Recovery, for me, began not with love for my body, but with the simple desire to stay alive.

I began eating again, slowly and carefully. On paper, it looked like recovery—my calories were adequate and my body was functioning. Mentally, though, I was still trapped. I measured every ounce of food, logged every calorie, and spent hours preparing meals to ensure perfect precision. I told myself that it was about maintaining my metabolism, but it was still about fear—the fear of losing control, the fear of gaining weight, and the fear of trusting my body.

Even when I was "eating normally," my life revolved around food. I avoided restaurants unless they posted nutrition information online. I sometimes ordered takeout, only to bring it home and weigh it myself. I had simply traded starvation for obsession. I thought that I had my eating disorder under control, but in truth, it still controlled me. 

Around this time, I began experiencing digestive symptoms: constipation, vomiting, reflux, and pain. I now believe that my disordered eating—the pendulum swing from restriction to bingeing, my extremely high insoluble fiber intake in order to eat high volumes of food with the least amount of calories, and my reliance on laxatives due to my food restriction—played a role in triggering my ulcerative colitis, along with the mental/emotional stress caused by it all.

When I was finally diagnosed with IBD, I thought that my disordered eating would take a back seat. I was wrong. Chronic illness can be fertile ground for eating disorders to grow. The constant focus on diet, the fear of flares, and the unpredictability of symptoms can reawaken old patterns of control and restriction.

In the hospital, I was prescribed prednisone and given a list of "safe foods." Back home, I stuck to that list religiously. Underneath it all, though, my old compulsions still resurfaced. I limited not just insoluble fiber, spicy foods, dairy, and alcohol—which are common triggers during flares—but also carbs, sugars, and sodium. This was due to the fear of prednisone-induced weight gain—the water retention, "water weight," or "moon face" that prednisone could cause. I told others that it was about inflammation, but in truth, I was relapsing again—this time under the socially acceptable cover of a "medical diet."

This is one of the hardest truths about eating disorders and IBD: the overlap between medical management and disordered eating behaviors is often blurred. The two can feed each other in quiet, dangerous ways.

IBD can create new patterns of disordered thinking in people who have never struggled with eating disorders before. This is because when your body betrays you like it does with IBD, food becomes (or at least feels like) one of the few things that you actually can control. Plus, when your weight fluctuates rapidly—sometimes losing as much as thirty pounds in a week and then regaining it soon after—it can completely destabilize your sense of self. 

For those with body dysmorphia or a history of disordered eating/anorexia, this is especially dangerous. There's no such thing as "small enough" in the mind of someone with an eating disorder. Seeing a "low" number on the scale (even when it's caused by illness) can increase your dopamine and ignite the urge to chase that number, again and again. I remember logically understanding that my low weight during my flare was unhealthy, but emotionally, I still felt anger and panic when the scale went up after treatment. Prednisone's mood swings certainly didn't help with this either—I was at war with both my mind and body.

Now, in remission from IBD, I can finally say that I am also in recovery from my eating disorders. Even so, recovery (like remission) is never as simple as it sounds.

Even in remission, disordered eating behaviors can quietly persist. For many of us with IBD, it shows up as hypervigilance around food: the fear of new foods, the obsession with "safe" meals, or the guilt after eating something "off-plan." It can look like avoiding social events involving food, fixating on weight fluctuations caused by steroids, or tying self-worth to whether symptoms worsen after a meal. These behaviors can masquerade as "caution," but they're often echoes of deeper fear—the fear of pain, the fear of loss of control, and the fear of being sick again.

The parallels between IBD and eating disorders are striking. Both involve an uneasy relationship with the body—a sense that your own physical self has turned against you. Both can make you feel powerless, trapped, ashamed, and isolated. Both can lead to cycles of control and surrender, as well as perfectionism and self-punishment. And both are often invisible to others, hidden behind a mask of composure and "doing fine."

Today, my relationship with food is no longer about control—or at least, I'm trying to keep it that way. I eat intuitively when I can, forgive myself when I can't, and I remind myself that nourishment is not a punishment or reward; it's an act of care. My body has been through battles most people can't see—battles maybe I never even noticed. My body deserves gentleness, not control or being told that it isn't "good enough." Yes, my body may have not been the kindest to me over the years, but I also haven't been the kindest to it in return. While my body may have betrayed me in some ways due to my IBD, it has also gotten me through my IBD, my eating disorders, and so much more. My body is not my enemy. My IBD is not my enemy. My weight is not my enemy. How I look in the mirror one day versus how I look in the mirror the next is not my enemy.

Living with both IBD and a history of eating disorders means constantly walking the line between vigilance and obsession, as well as between self-protection and self-harm. Even so, I've learned that healing is not about never struggling again—it's about recognizing when the struggle starts to whisper and, this time, choosing to listen with compassion instead of control.

For more information on disordered eating & IBD, check out this patient-created resource by the ImproveCareNow Patient Advisory Council.

Image from @jogaway on Unsplash.

Lessons from My Gut

by Beamlak Alebel (Addis Ababa, Ethiopia)

In the background is a muted sunset. On the right side of the photo, a person uses their hands to make a “frame” around the setting sun.

Yes, I am unique —

my gut became my greatest teacher.

It whispered truths through pain and peace,

showing me the strength in stillness,

the courage in listening,

and the power in being mindful of my body and mind.

I learned to honor,

to protect my quiet spaces,

to find balance between struggle and strength,

between ambition and acceptance,

between the heart’s desires and the body’s needs.

Through pain, I discovered patience.

Through discomfort, I discovered resilience.

Through every challenge, I discovered myself.

Awareness became my guiding light —

a lens through which I saw not just my struggles,

but my strengths, my possibilities, my growth.

It taught me not to blame,

not to expect perfection,

but to understand, accept, and nature.

Now, I walk as an all-rounded soul,

shaped by scars,

strengthened by storms,

yet softened by compassion.

I have learned that life’s lessons are never small;

each one shapes us, molds us,

and pushes us to rise higher than we imagined.

In the CCYAN community, I have found reflection.

Here, voices rise together,

hearts open together,

stories weave together into one shared hope.

We are not alone in our journeys —

our struggles are witnessed, our victories celebrated,

our voices lifted to inspire one another.

My gut has taught me more than pain;

it has taught me presence,

purpose,

patience,

and peace.

It has taught me that even in moments of uncertainty,

even when life feels heavy,

we can remain mindful, balanced, and whole.

And through it all, I continue to grow —

an all-rounded human,

aware, strong, compassionate, and ever-learning.

Photo Credit to: Shutterstock 

To See What Cannot Be Seen: Living with Chronic Pain and IBD

by Michelle Garber (California, U.S.A.)

A blue and black striped background, with the word “PAIN” spelled out in medications.

When most people hear the word "remission," they imagine relief, a clean slate, and the end of suffering. For those of us living with Inflammatory Bowel Disease (IBD), remission is supposed to mean that we can finally be free of the pain that controlled our lives and simply breathe again. Unfortunately, for so many IBD patients, remission doesn't mean that the pain disappears. Rather, our pain changes form. Our pain becomes quieter, more private, and more invisible. It becomes the kind of pain that can exist in silence. The kind of pain that may not scream for help, yet it still whimpers day and night. The kind of pain that is easy to be overlooked while the rest of the world assumes you're fine.

Chronic pain is one of the most misunderstood aspects of IBD. It lingers long after flares fade, threading through your days in ways that are impossible to explain. It's invisible, yet constant. It's being in pain every single day, but learning to function anyway because you have no other choice. Chronic pain has become a part of my life—like a ringing in my ears that I've had to learn to ignore. I've learned to appear "fine" because visible pain tends to make others uncomfortable, and because I've discovered that admitting the truth often leads to dismissal. I have become so adept at masking my pain that I've become fluent in pretending. Pretending that I'm not silently calculating how much longer I can keep standing before the pain in my abdomen forces me to sit down. Pretending that the subtle grimace that escaped when I moved the wrong way was just a product of my "resting b*tch face." And pretending that "pain" is no longer in my vocabulary.

The pain of IBD patients also commonly goes unrecognized by medical professionals because the traditional 1-10 pain scale was not built for those living with chronic pain. For example, if I tell a doctor that my pain is at a "6/10," they may interpret that as "moderate discomfort." For those without IBD or chronic pain, though, my "6" might be their "10." Our baseline is simply so different from those without chronic illness/chronic pain, therefore making the standard 1-10 pain scale almost meaningless for us. This can have dangerous consequences as pain is typically the body's signal that something is wrong. When we are constantly experiencing pain, it can be difficult to determine whether it's "significant enough" to seek help or whether it's just our "new baseline." The fact of the matter is that any pain should be and is "significant enough," but we've been conditioned to not view it as such. We've been conditioned to accept a new and distorted "baseline level of pain" due to our illness, when those without chronic pain are not encouraged to do the same. Therefore, it can be hard for both us and medical professionals to know when something is "wrong," creating the potential for treatment delays, disease progression, prolonged suffering, and—depending on the illness—even fatal consequences. 

Living with chronic pain often means learning to downplay your pain. No matter how much pain I'm in, I never rate my pain as a "10." I rarely even rate it as an "8" or a "9" because I know what happens when I do. I've seen "the look." It's that flicker of suspicion that crosses a medical provider's face when you say you're in severe pain, but you don't exactly "look" like it. I have felt the shift in tone when my honesty is mistaken for medication-seeking or when my tears are assumed to be those of ‘crocodiles.’ Because as it has been made quite clear by many medical professionals, if you don't have overwhelmingly visible evidence of your pain, then it must be exaggerated. Or, you must have a mental illness since "it's just anxiety," and "it's all in your head." So, like many others, I minimize my pain. I say that it's a "4" or "5." I'll tell doctors that my pain is manageable, even when it's often very much not.

The stigma of simply wanting relief is one of the cruelest aspects of IBD and chronic pain. The truth is, it's terrifying to need help in a system that might not believe you. IBD also presents unique challenges when it comes to pain management. Nonsteroidal anti-inflammatory drugs (NSAIDs) are usually off-limits because they can actually trigger flares. Opioids, while sometimes the only medications strong enough to even touch the pain, are approached with understandable caution due to their risks (i.e. the potential for constipation, dependency, and/or substance use disorder). As a result, we're often left to "cope." We're told to meditate, breathe, use heating pads so often that we burn ourselves, and/or use methods of distraction while our insides feel as though they're literally being twisted inside-out. If we're lucky, we might just get a pamphlet or a link to a video explaining these coping mechanisms. We're essentially almost abandoned by most medical providers as they expect us to endure significant pain without the use of effective pain relief options. 

Don't get me wrong, these coping skills can help, but they certainly don't erase our pain. They just make it more bearable. Over time, the constant strain of pushing through the pain can wear down even the strongest person—the person who has "been through it all" and has a "high pain tolerance." Chronic pain doesn't just live in the body. Chronic pain infiltrates the mind and can chip away at one's patience, hope, and even will to keep fighting. 

Yet, I understand why providers are cautious when it comes to pain management because I've seen the other side of it too. I currently work at a substance use disorder treatment center as a soon-to-be therapist. I've noticed that many clients' struggles with substances began in the same place: pain. Some struggled with physical pain, some with emotional pain, and many with both. Some clients even suffered from chronic illness(es)/injuries, were told that there was nothing that could be done for their pain, and were never provided with any sort of pain relief by their doctors. Others were prescribed opioids for a while and were then abruptly cut off from them by their medical providers. Much of their substance use history echoes the desperation that many IBD patients have also experienced—the desperation to simply function. The desperation to hold down a job and just get through the day. The desperation to be able to sleep through constant throbbing and aching. The desperation to escape one's pain for "just five minutes." The desperation to just be. 

These stories serve as a reminder that pain affects so much more than what meets the eye. That's why it hurts so deeply when our pain is minimized by doctors, friends, family members, partners, and even by ourselves. We tell ourselves that our pain isn't as bad as it feels, while we're quietly counting the minutes until we can lie down. We tell others that we're "fine" because we don't want to be seen as "fragile" or "dramatic." We tell doctors lower numbers on the pain scale so that they'll take us seriously. Many of us would rather suffer quietly than risk being labeled. We learn to mask pain so well that even those closest to us never usually realize the strength it takes for us to just get out of bed.

Masking pain comes at a cost, though. Each time we minimize our pain, we invalidate our own experience. We erase a little bit of our own truth, piece by piece—a small but painful act of self-betrayal that we've been conditioned to commit in order to be believed. Masking pain also isolates us. It makes our struggle invisible, and in doing so, it allows others—including medical professionals—to not be able to see the undeniable pattern of IBD patients with chronic pain.

Pain is not just a symptom. It's a lived experience that profoundly shapes our relationships, our work, our self-worth, our future, and our sense of identity. For example, we might pursue occupations that don't require physical labor, and we might choose living environments that are close to our caregivers/doctors, have bathtubs over showers, and lack staircases. For those of us living with a chronic illness, pain becomes part of who we are—not because we want it to, but because it demands to be acknowledged. 

Living with chronic pain and IBD means existing somewhere in a space between endurance and exhaustion. Between being believed and being dismissed. It means learning to hold compassion for yourself, even when the world doesn't. It means carrying an invisible burden that requires extraordinary strength to bear, even though it feels as though you have no strength left to do so. It means showing up—for others, for yourself, and for life itself—often without anyone realizing just how much effort it all takes. 

That quiet persistence is something that I have come to admire deeply, both in myself and in others who live this reality. Because even when our pain is invisible, our resilience is not. It serves as a powerful testament to every person who keeps going despite their own body making the simplest things feel impossible. And even though our pain may be a part of who we are, our resiliency proves that it is certainly not all of who we are. We are so much more than our pain and our illness.

Still, our pain deserves to be acknowledged. Our stories deserve to be believed. Our healthcare system must learn to see what cannot be seen—not to just treat the illness, but to honor the full human experience of actually living with it.

Therefore, we need a better way to talk about chronic pain, especially in regards to IBD. We need providers to understand that our "normal" is not their "normal." That just because we appear to be "fine" does not mean that we are not suffering. That pain in remission is real. And that asking for pain relief isn't manipulation—it's survival. 

Living with chronic pain and IBD means learning to navigate a world that often doubts what it can't see. But we exist, and our pain is valid. It's time for the system and the world to finally see us because if you look hard enough, you'll see that our pain is actually not as invisible as it seems—it just continues to go unseen. 

Image by @gnikomedi on Unsplash.

Reflections on Curating the “Familial Patterns” Art Show

by Kaitlyn Niznik (New York, U.S.A.)

If you haven't already, you can watch a video tour of Kaitlyn’s “Familial Patterns: Generations of Patients” art show here! 

Acknowledgements: My warmest thanks to Shelly Philips - my co-conspirator for the show, to Deborah Reid and Tracy Hayes who run Gallery RAG, CCYAN alum Selan Lee for helping me find my message, and to all the CCYAN members and chronically ill creatives who submitted work! This was my first time curating a show and I'm so thankful I had that opportunity!

Since the start of my CCYAN fellowship, I wanted to make an art show highlighting people's shared experiences with chronic illness.  In July, I went to Gloucester with a goal and a promised gallery space – while I couldn't fully visualize the show until everything was up on the walls, and imagined so many variations of the themes, ultimately focusing the show on family connections to chronic illness made it much more personal.  

Shelly and I spent the duration of the show gallery-sitting and having conversations with visitors about the show's theme. As we reflect back on our time at Gallery RAG, Shelly and I have some final thoughts we'd like to share: 

The stigma associated with Crohn's, colitis, and other chronic conditions is something rarely seen, let alone talked about openly. Gallery RAG, which stands for Radical Acts of Generosity, was the perfect place for us to launch this exhibition and confront people's preconceived notions of illness. The show was just a drop in the bucket to spread awareness and promote acceptance. It allowed people to come together from isolated communities - even crossing oceans to create connections. One visitor reflected on her husband's chronic illness and his struggle to find motivation to get out of the house. She thought a creative outlet might help him feel seen and accepted. Others also shared stories with us, about different loved ones struggling with their health. Sometimes just showing up is half the battle, making a safe space to create, breaking the cycle of isolation, and talking about taboo topics that are usually swept under the rug. It felt good to normalize our medical issues and talk about them casually with visitors. We hope the gallery guests and livestream viewers were able to connect with the amazing variety of pieces in the show. 

Looking into the future, Shelly wants to explore how to reverse the curse of chronic illness by lessening its impact on future generations. She hopes to look into how that in itself could break family cycles of trauma. Shelly wants her future work to shed light on the mothers who never knew that they had undiagnosed autoimmune or inflammatory disease. She plans on investigating how history repeats patterns in the things handed down - after mothers have already passed down the cellular dysfunction - and exploring what immune modulation, environmental changes, and the microbiomes change such patterns. During our conversation, Shelly also talked about Alexis Gomez’s poem about seeing her mom in a different light and how much that touched her. We hope to collaborate more in the future to share the patients’ perspective and focus on how art/writing can be a healing tool.  

We loved how the poems and art in the exhibition worked together. Seeing all the different submissions from poetry, collage, zines, prints, paintings really showed there are so many expressive outlets to utilize. It felt larger than us and we are so grateful we had the opportunity to share your stories. We enjoyed the challenge of making the show accessible for everyone - whether international or on the other side of the country and we can't wait to see what our next chapters bring!

If you haven't already, you can watch the video tour of Kaitlyn’s “Familial Patterns: Generations of Patients” art show here. Below, you can also see some of the pieces submitted by CCYAN fellows and other community members! 

Beamlak Alebel’s (CCYAN Fellow, Ethiopia) poem, “A Heart That Heals,” thanked all the doctors, nurses, surgeons, family, and friends for helping her on her journey to healing. Her heartfelt gratitude shined through to readers who shared their appreciation for their own support systems.  

Aiswarya Asok’s (CCYAN Fellow, India) poem, “Mosaics.” tackled the grief and emotions attached to carrying her mother’s hidden pain. Aiswarya’s piece offered a glimmer of hope, in that through our endurance and shared suffering, we might find more answers and a better prognosis to bring about change. 

Alexis Gomez’s (CCYAN Fellow, USA) poem, “Letter to Mom,” also reflected on her relationship with her mother and how similar yet different their medical journeys are from one another. Her writing felt like a sincere attempt to grapple with mixed emotions, her mother’s guilt, and their shared perseverance in the face of IBD.  

Multiple works from artist Andreana Rosnik, including: “Recipes for a Flare,” a collage communicating the danger and inflammation that comfort foods might cost us internally, which took me back to my own fights with food. “Portrait of the Artist as a Colon,” a zine (a small art booklet) illustrating her challenges living with Ulcerative Colitis. As an artist who also draws colons, I appreciated Andreana’s refreshing take on a digestive system fraught with issues. Her “colon wyrm” and “biblically-accurate intestines” deserve a spotlight as well, and could easily be made into merch and tshirts for other folks with colon issues.     

Nancy Hart’s acrylic painting, “COW,” (top right) depicted a pink cow silhouette on a black and white backdrop to represent one of her many inherited allergies. Marnie Blair’s print, “Snakes and Rivers,” (center) echoed ideas of transformation and survival on the surface of a blue disposable medical drape. The layers of meaning and the subtle ties to both the body and environment appealed to us as we were curating the show.   

See the rest of the featured artwork from Kaitlyn and other CCYAN community members in the video tour!

The Hidden Struggle: Medication Access and Equality for IBD Patients

by Beamlak Alebel (Addis Ababa, Ethiopia)

In the foreground is a graphic of a worried-looking young girl with medium-dark skin, braids, and an orange shirt. Behind her are transparent graphics of an intestine, medications, and other people feeling sick (one holds their stomach, another holds their head). The whole graphic has a dark orange filter.

Treatment is more than a diagnosis or a prescription — it’s about whether the medicine you need is available, affordable, and within reach. For many IBD patients, that uncertainty becomes a heavy burden. It’s hard to stay strong when your survival depends on something you might not find or afford tomorrow.

For me, the struggle is deeply personal. Every month, when it’s time to get my medication, I feel both guilt and sadness. I can’t ignore the heavy burden it places on my family. Watching my parents worry about how to afford my treatment hurts more than the illness itself, especially since the medicine is rarely available in public hospitals. Even though they never complain and always care for my feelings, I can see the stress in their eyes — the quiet fear of what might happen if one day the medicine becomes too expensive or unavailable. It’s painful to live knowing that your survival is also your family’s financial struggle. I wish the medicine could at least be less expensive and easily accessible everywhere, so no one would have to choose between health and hardship.

The world has powerful medicines with great potency — but what is the use of their strength if only a few can afford them? True progress in healthcare means making effective treatments available and affordable for everyone, not just for those who can pay the high price.

Access to medication is not a privilege; it is a lifeline. Yet in many places, that lifeline is fragile. I have seen patients lose hope — not because their illness defeated them, but because the system failed them. Seeing people treated as if their lives are less valuable simply because they are sick is one of the deepest pains a person can feel. It makes you question your worth. It makes you feel invisible.

But we are not invisible. We are fighters, dreamers, and survivors. Our illnesses may have changed our bodies, but they have not taken away our strength or our right to be seen, respected, and included.

Equality should not only exist in words or promises. It must exist in action — in how policies are written, in how medications are distributed, and in how people with chronic illnesses and disabilities are treated. I know how it feels to be looked at differently, to be judged for something beyond your control. What we have is an illness, not a choice.

Even in schools and health-related fields, there are times when lecturers or professionals do not fully understand what it means to live with a chronic condition. They see our physical state but not the strength it takes to show up, to keep learning, and to keep fighting. Being judged for taking sick leave or missing class because of health reasons can make a person lose hope. For now, we keep silent — but one day, we may speak as a volcano when the time comes. Because silence does not mean weakness; it means patience, and patience has power.

I dream of a world where no one loses hope because of a lack of medicine or misunderstanding — where being different is not a reason for exclusion, and where compassion leads policy and practice. Modern research is advancing, but true progress will come when every patient, everywhere, is valued equally — when access to care and empathy become rights, not struggles.

Advocacy is how we get there. By speaking up, sharing our stories, and reminding the world that every life matters, we turn our pain into purpose. Because in the end, access to medication and equality are not just medical or social issues — they are matters of dignity, compassion, and humanity.

Everything will change one day — the policies, the systems, and the hearts of people. Until then, we keep raising our voices, believing that our struggles today can open doors for those who come after us.

Life with Crohn’s: A Visible Person with an Invisible Disability

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Image of a vast, white sky and ground covered in small brown pebbles. A person with a backpack stands far away, staring off in the distance.

It’s already been a month since I moved to Lisbon. As an Asian girl setting foot in Europe for the first time, almost everything feels new — the culture, the streets, even the rhythm of everyday life. My university is about an hour away from my dormitory, and each morning I take the Carris — the public bus. It’s often crowded, especially during rush hour. On days when I’m carrying groceries, standing becomes a real struggle.

At the front of the Carris, there are four seats reserved for the elderly, pregnant women, parents with children, and people with disabilities. Every time I see those signs, I ask myself quietly: 

Where do I fit in?

Am I “normal”?

Am I someone with a disability?

For a blind person or someone in a wheelchair, the condition is visible — their challenges are seen and, therefore, more understood. But for someone like me, living with Crohn’s disease, the weakness is invisible. Even carrying my laptop sometimes feels like lifting a boulder. On bad days, groceries are out of the question.

A few times, I’ve taken one of those reserved seats just to rest for a moment — and on more than one occasion, an older passenger scolded me in Portuguese. I didn’t have the words, or the energy, to explain.

To make things easier, I sometimes order my groceries online. But when the delivery person arrives and I ask them to carry the bags up the stairs, I often get that same puzzled, slightly judgmental look — as if I’m just being lazy.

The truth is, many people still don’t know what Crohn’s disease is. And when you’re in a new country with a language barrier, explaining your condition to every stranger sometimes isn’t possible.

One day, I was sharing this with a senior from my university. She listened and then said something that stuck with me:

“From the outside, you just look a bit tired and thin. A lot of people are like that. How would anyone know what you’re going through?”

And she was right. There’s no visible “signature” for people with invisible illnesses like IBD. No sign that quietly says, I’m struggling, even if you can’t see it.

That “signature” matters — not just for access to certain rights or support, but also for empathy. When people can recognize what you’re dealing with, even without words, life becomes just a little more humane.

I’ve been thinking: instead of only pushing for general awareness, maybe it’s time for a more practical step — some kind of universal identifier for invisible disabilities. It could be a color band, a card, a small badge — something that lets others know that, while we may look fine, we’re fighting battles they can’t see.

Because when life is already heavy with these hidden challenges, constantly having to explain yourself shouldn’t be another weight to carry.

Thank you for reading. See you next month.

Featured photo by Kyle Miller from Pexels.

The Day I Chose to Fight: Surgery, Strength, and the Power of the Mind

by Beamlak Alebel (Addis Ababa, Ethiopia)

An image of a person standing on rocks, balancing an extremely large boulder. It looks like they are trying to push the boulder up the incline. In the background is a wide open desert landscape.

There are days that change us forever — not because we are not ready, but because life gives us no choice. For me, it was the day I faced surgery.

That moment came with fear, complications, and a sense of losing control over my body and even my appearance. I wasn’t prepared — not mentally, not emotionally. Yet I had to choose: risk everything or let everything fall apart.

Before that day, I never imagined hearing the words: “You may be moved to the ICU.” No one is ready for those words. Your heart races, your mind fills with unfinished dreams, and suddenly life and death sit together in the same breath.

But when that moment came, I made my choice. I chose life. Even with all the unknowns. Even with the pain. Because sometimes the bravest step you’ll ever take is the most uncertain one.

Over time, I learned that strength isn’t about muscles or energy — it’s about mindset. When your body feels defeated,your mind becomes your strongest weapon. Deep inside me, beneath all the fear, I found a hidden strength I never knew I had.

Yes, I cried. Yes, I doubted. But I rose.

Living with IBD has stolen parts of my childhood, but it has also taught me to fight. My strength didn’t appear overnight — it grew through countless painful moments that shaped me into the woman I am today.

And here’s the truth I want others to know: we don’t need approval from anyone to define us. We know our own limits, and we know our own strength. Scars don’t make us less — they prove we survived.

If you’re standing at the edge of fear right now, please remember: you are not alone. The fear is real, but so is your courage. Even when your body is tired, even when others don’t understand — your mind can carry you further than you think.

We are not broken.

We are not our scars.

Photo from @vicky49 on Unsplash.

“Let It” — My Rule for Living with IBD (Mental Health & IBD Series)

by Beamlak Alebel (Addis Ababa, Ethiopia)

Two hands reach towards one another. One is handing a black paper heart to the other outstretched hand.

Living with Inflammatory Bowel Disease (IBD) is a journey no one truly understands unless they’ve walked it themselves. It changes your body, your mindset, your lifestyle — and even your identity. Over the years, I’ve discovered a rule that helps me rise above the noise, pressure, and pain: 

“Let It…”

It reminds me to stop fighting what I can’t change and instead make peace with it — to keep breathing, keep moving, and most of all, keep living.

Let It Be What It Is

IBD is unpredictable. One day you feel okay; the next, you’re back in the hospital.

I remember one exam day when the classroom was overcrowded. I had followed every rule—no phone, fully prepared—but when I arrived, every desk was already taken. There was no seat left for me.

It wasn’t a flare. I had come ready to write the exam, but the conditions made it impossible. I felt angry and frustrated—I had put in the effort, yet I was turned away by circumstances beyond my control. Missing that exam hurt deeply, not only academically but also emotionally. Still, I whispered to myself: “Let it. Everything has a reason.”

Let People Say What They Want

“You don’t look sick.” “Are you sure it’s that serious?” People don’t see what happens behind closed doors — the fatigue, the pain, the hospital visits. Their words used to cut me, but I’ve learned: “I don’t need to prove my pain.”

Let Yourself Say No

There are foods I can’t eat, events I can’t attend, and expectations I can’t meet. I used to feel guilty for saying no, as if I was letting people down. Now I know: “Let yourself say no. It’s not weakness — it’s wisdom.”

Let Hope In

On the hard days, hope is my medicine. Sometimes all I can say to myself is: “Tomorrow is another day.” And that’s enough. Even a tiny spark of hope can carry me through the darkest moments.

Let Go of Pressure

IBD puts pressure on every part of life — physically, emotionally, and socially. I’ve let go of the need to be perfect. If my body tells me to rest, I listen. If I miss something important because of my health, I remind myself: “My health comes first.”

Let Life Be Easier

I no longer compare my life to those who seem to “have it all together.” My peace, joy, and success may look different, and that’s okay: “Let life be gentle, even if it’s not always easy.”

Photo from Unsplash.

Diagnosis is a Light, not a Lamp Shade (Mental Health & IBD Series)

by Aiswarya Asokan (South India)

In front of a grey wall, there is a small green plant in a pot that says "grow grow grow," a table lamp with a white shade and wooden base, and a small moon-shaped nightlight atop a wooden base.

It was on May 2nd 2016, a day before my 19th birthday, for the first time in my life, I heard the word Crohn’s, from my doctor back then. It came as a scientifically valid explanation to all the so-called “sick drama” I was exhibiting through the years. But the excitement of this achievement soon faded away when I came to know that there is no cure for this. Then came the joint family decision, we will keep this diagnosis a secret to ourselves. Anyways, who is going to accept me if they know I have got a disease that makes me run to the toilet and that I have to be on regular medication to stop this from happening. For the next 4 years, I lived like a criminal, fearing for every breath this crime will be caught.  In between, I was ill informed about the dietary restrictions I was supposed to follow, and kept eating triggers from time to time, meanwhile wondering why this is happening – but was still focused on keeping the secret safe.

Still, life was a smooth sail with a few days of bad weather here and there, till 2020, when I had my worst nightmare: a serious flare that left me hospitalized for more than 2 months and unable to take my final year university exams. And my secret was out. Not being able to appear for exams was too much for an academically excellent student like me. I was experiencing such intense pain that I couldn’t even turn sides in bed. All this made me question my identity and shattered my fundamental belief system. None of the medicines were working on me. A group of surgeons visited me, and told me that if surgery was attempted, my life might be over on the table. When I realized I might die soon, I decided to live a little. Even though I was not able to eat anything, I ordered a red velvet cake and ate it. The 2020 Tokyo Olympics were going on – it was my all-time wish to watch the Olympics live, but my academic schedule did not allow me to do so. So from the hospital bed, I watched Neeraj Chopra win a gold medal for India, while all my classmates were taking final year exams.

After a while, steroids started working and I started getting better. At the age of 23, I was 33 kilograms, severely malnourished and on a high dose of medication. I was not afraid to die but coming back to normal life was a challenge. I couldn’t face people nor attend phone calls. Even notifications from messages were alarming for me. I zoned out from everyone around me. I felt myself as a complete failure. 

One person kept on calling me, despite me ignoring all their calls, until one day I finally picked up. He was my childhood bestie, who stood with me till I was able to manage things on my own. He made a timetable for me, which included slots for physical activity, exam preparations, and fun activities, and made sure I followed them on a daily basis. Then the exam date came up. There were times when I took supplementary exams alone, in a hall that usually accommodates 60 students. Everyday after the exam, he would ask me how it went, and suggest a movie to watch as a reward for the hard work. After a while, exam results came, and I had the highest score than previous years. Life was again on.

A journal entry from Saturday August 19th, 2023. Text written in blue ink reads “I can’t recollect a day without pain. I can’t take this anymore. I can’t look at the mirror. I have forgotten how I was before. I don’t know how to get out of this. Where to get help from, who can understand me.”

Whenever a flare up hits me, the first thing I notice is a keen desire for physical touch, especially a warm hug, though it sounds strange. I also clench my jaw while asleep, to an extent that my whole face and ears start to hurt the next morning, which further makes it hard to have food. Within the next 3 years, time was up again for a rollercoaster. I had a stricture, unbearable pain, my oral intake was nil, and I had to go for a hemicolectomy. The anticipated complications for the surgery were extremely frightening. This time my boyfriend came up and assured me that “no matter what, I will be there for you.” The surgery went smoothly and I was discharged. I was physically fit but started experiencing PTSD-like symptoms. I started feeling I was just a financial burden to my family.

I slept all day and night as I was not ready to face the thoughts in my head. My boyfriend used to call me every day – just for those few moments I was living, but the rest of the time I used to sleep.  This time no friends nor family could help me. Then I started searching for IBD support groups, came to know about IBD India, took the free mental health counselling, and joined the peer group. For the first time, I felt less isolated and felt a sense of belonging. And slowly I replaced my coping mechanism of sleeping with painting. Gradually I was healing, and started feeling more freedom like never before. 

Life goes on. Ups and downs are part of it. But when one door closes the other opens. When you feel stuck, ask for help and keep asking until you get one strong enough to pull you out — that is the bravest thing you can do for yourself.

Image from Unsplash.

Learning to Complain: A Survival Skill for Chronic Illness

by Akhil Shridhar (India)

A cream colored background with graphics of doctors and patients having discussions.

For many of us living with IBD, saying “I’m fine” has become a habit, something we were taught to say to avoid worrying others or causing trouble. But managing a chronic condition means we can’t afford silence. Doctors need us to describe what hurts, what’s changed, and what’s not working. At first, that shift feels unnatural. How do you speak up about pain when you’ve spent years trying to hide it? Learning to explain what’s wrong isn’t just about getting better care, it’s about breaking the silence, challenging stigma, and making sure our needs are heard. Speaking up is advocacy, and it starts with learning to complain. Many of us were taught to downplay pain, brushing off discomfort to seem strong. 

This kind of silence runs deep, shaped by family, culture, and a society that equates quiet with resilience. But for people living with IBD, staying silent can be dangerous. It leads to delayed care, isolation, and missed warning signs. Although, learning to speak up about symptoms is just a part of it. Especially in developing countries like India, where systems often lack the integration, communication is not just helpful but essential. For most, the responsibility of managing appointments, tracking medical records, logging test results and prescriptions, consulting different specialists, and coordinating insurance doesn’t fall on an organised platform, it falls on the patient.

A cream colored background with graphics showing the many different effects of IBD. There are a series of graphics showing a cartoon person dealing with urgency, cramping, nausea, fatigue, hiding symptoms, taking medications, struggling to eat, and mental health. These graphics are circling an image the human body, to convey the multi-systemic nature of IBD.

Living with IBD means your body goes through changes that aren’t always easy to explain. Symptoms come and go, and sometimes they’re hard to put into words, especially if you’ve spent years being told not to make a fuss. When you share what you’re feeling clearly and honestly, you’re helping your doctor understand how to support you better. It’s not complaining, it’s communication. And with a little guidance and the right tools, you can learn to speak the language of your symptoms in a way that leads to real care and understanding. 

Doctors rely on clear, consistent information to track how IBD is affecting your body, and that’s where accurate symptom-sharing becomes key. The table below outlines the kinds of details that help build a more accurate picture of your condition.

Living with IBD often means navigating a maze of symptoms, appointments and uncertainty. But the ability to speak clearly and communicate will go a long way in getting the care that we deserve. That’s why this table isn’t just a tool, it can help you bridge the gap between what you feel and what the doctor needs to know. Remember, this guide is meant to serve you, so feel free to adapt it, add to it, and make it your own. Bring it to your appointments, refer to it and use it to shape your care in ways that truly reflect your needs. 

This log table is for you to document your symptoms and experiences in a structured manner. Save a copy and take notes or just use it as a reference for your next appointment!