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!

Some Do’s and Don’ts of Travelling Internationally with IBD

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Last month, I took my very first cross-border trip—from Dhaka, Bangladesh, to Delhi, India. It wasn’t just my first international journey; it was also my first time traveling by air. That alone is exciting enough, but there was something more that made it meaningful: it was my first adventure after being diagnosed with Inflammatory Bowel Disease (IBD).

Traveling is always a mix of excitement and unpredictability. Add a chronic illness to the equation, and every small detail becomes a bit more complicated—navigating airports, managing fatigue, handling meals, and dealing with unexpected flares. But from this experience, I learned some lessons I believe could help others who are walking the same path. So, here are a few do’s and don’ts for fellow warriors out there traveling with IBD:

✔️ Do: Plan Your Journey Thoroughly
When you live with IBD, planning isn’t optional—it’s survival. While no amount of planning can prevent every hiccup (hello, Murphy’s Law), it certainly softens the ride. For instance, simple things like knowing where to buy a local SIM card, or how to book an airport cab ahead of time can make a huge difference in having a smooth start!

✔️ Do: Ask for Help When Needed
This is something I struggle with, especially as an introvert. At the airport on my return flight, I was utterly exhausted and going through a flare-up. A kind airport staff member offered to assist me, but I declined—probably out of habit or hesitation. I regretted that later. When you’re in an unfamiliar place, everyone is technically a stranger anyway. So if help is offered, take it. Even small support—like directions to the washroom or help carrying your bag—can be a huge relief when your energy is limited.

❌ Don’t: Follow Others’ Travel Routines Blindly
Everyone’s body is different. What works for your friend might not work for you—and that’s okay. Several people recommended I take the Delhi Metro to get around. It sounded smart, economical, and even a little adventurous. But for someone already fatigued, changing between the Yellow and Pink lines during rush hour turned into a nightmare. That day ended in a flare-up. Lesson learned: listen to your body first. Your energy is precious—don’t waste it trying to keep up with someone else’s idea of efficiency.

These are just a few of the moments from my first international trip with IBD. Traveling with a chronic illness can be isolating. Often, it’s hard to explain your condition or expect some stranger to truly understand it. But the truth is: you understand it. And that’s enough.

Acceptance and self-awareness are your greatest tools. Don’t let IBD define your boundaries. Opportunities are still out there, and you deserve to chase them. If you make room for compassion—for yourself first—you’ll find that you’ve already conquered half the challenges.

Don't forget to enjoy my short video of the journey (linked below!). Again, I thank you for reading this far. See you next month!

A Heart That Heals

by Beamlak Alebel (Addis Ababa, Ethiopia)

A close-up photo of a bowl full of acorns. The bowl is engraved with the word “thankful,” and there are acorns scattered in front of the bowl.

Through sleepless nights and heavy days,
You lit my path in countless ways.
With faith and strength, you pulled me through,
Restored my soul, made all things new.

To doctors wise, with healing hands,
Who serve with love in every land—
With knowledge deep and hearts so kind,
You brought me peace and strength of mind.

To the surgeon, calm and true,
Whose steady hands saw me through—
With courage firm and vision bright,
You turned my pain to healing light.

To nurses kind with gentle care,
with whispered prayer—
With watchful eyes and steady grace,
You made the hardest moments safe.

To family strong, who stayed so near,
Who held me close through every tear—
Your endless love, so fierce and true,
Was my sky bright when storms blew through.

To friends who stood through every test,
With laughter shared and hearts at rest—
Your joy and comfort every day
Helped chase the fear and dark away.

To support groups, warm and wise,
Who lift each other’s truths and cries—
You showed me I am not alone,
In every scar, our strength has grown.

Through trials, triumph, joy, and pain,
My gratitude will still remain—
To every soul who walked with me,
I thank you all—eternally.

Image from StockSnap.

My Crohn’s Journey as a College Student

by Alexis Gomez (California, U.S.A.)

Two side-by-side photos of Alexis, a young woman with medium-brown skin and dark brown hair. There is a graphic of a curvy yellow arrow, pointing from the first photo to the second. The photo on the left is from Alexis’ freshman year of college, after just being diagnosed with IBD. Alexis is standing in front of a wall of ivy, wearing comfortable clothes. She is smiling, but looks pale and tired, with a bit of prednisone “moon face.” The photo on the right is from Alexis’ college graduation. She stands in front of a walkway with many arches, wearing a blue graduation cap and gown, with a yellow stole, and is smiling widely.

When I was younger, I had a vision of what my college experience would look like. It was more or less in line with what I saw in movies and TV shows – living away from home, making lots of friends, joining tons of clubs, going to clubs, perhaps finding the love of my life, maintaining my straight-A academic excellence, and knowing without a doubt that my future was secure.

I had always been a planner, always thinking ten steps ahead of where I was in the present. For as long as I could remember, I prided myself on being independent, meticulous, and motivated to succeed. I thought I had it all figured out, and that all I had to do was check off the boxes of my to-do list toward success. It was so simple, so straightforward… until it wasn’t.

What I never could have predicted or hyper-planned for was being diagnosed with a chronic illness at the age of eighteen. Shortly before starting my first year as an undergraduate student, I began experiencing symptoms of IBD. And throughout the course of my first quarter at school, my symptoms worsened. I had constant abdominal pain, urgent and frequent bowel movements with blood up to ten times a day, and a deep sense of shame that stopped me from telling anyone. Whenever I was with my friends and I had to use the bathroom, I’d laugh it off and say I just had “tummy problems.” The thought of telling anyone what I was actually experiencing felt terrifying because I didn’t have a clear answer for what was happening. I felt like it was my fault that I was experiencing these gastrointestinal issues; like I had somehow inflicted this on myself, and that just maybe it would go away if I ate healthier and prayed more.

As someone with a family history of IBD, there came a point where I knew deep down what was happening. I had been in denial for several months, thinking that there was no way I would have to live with a chronic illness forever. It couldn’t happen to me, I thought. Why me? This wasn’t what was in my perfectly thought-out and extensive plans for an amazing future. With every acute misdiagnosis from my doctors, I simultaneously felt frustrated but also held onto hope that I’d just suddenly start to get better.

During finals week of my first quarter of undergrad, I couldn’t hide or ignore my symptoms anymore. The burning pain in my abdomen reached a new level of severity, and I was overcome with weakness and fatigue. I could barely eat anything, and I couldn’t stand up without getting heart palpitations and being out of breath.

My mom helped me schedule an appointment for a colonoscopy to finally see what was going on and to confirm what I had been suspecting. The weeks I had to spend waiting leading up to the colonoscopy were tough. I rapidly lost weight (over 40 pounds within 2-3 weeks), I could barely get food or liquids down without vomiting, I would spend hours on the toilet trying to get some sort of relief from my abdominal pain (often with no success), my mouth was perpetually as dry as the Sahara, my eyes looked bloodshot and inflamed, and I couldn’t walk anymore. As I waited, I felt my autonomy and my identity slipping away from me. How could I be the daughter whom my parents knew was responsible, and who they didn’t have to worry about? How could I be the older sister to my younger brother, who always looked up to me, the older sister who could always provide a listening ear, comfort, and advice? I didn’t know who I was when I couldn’t even serve myself food, put my plate in the sink, walk myself to the bathroom, bathe myself, or brush my own hair. I didn’t know who I was without my independence. And I felt an overwhelming wave of guilt for putting my loved ones in a position where they had to do everything for me and see me suffering every single day.

I remember being in the recovery room after my colonoscopy and hearing my doctor say something that would change my life forever. In an oddly cheery tone, he said: “Well, Alexis, it looks like you have Crohn’s Disease!” I remember being 1) shocked initially, 2) put off by his cheerfulness, but also 3) relieved. Hearing that I had Crohn’s was scary, but I also knew I finally had an answer. I didn’t have to hide behind the curtain of the unknown or the inability to explain why I had the symptoms I did. I knew Crohn’s was an autoimmune disease, meaning that my body had one day mistakenly begun to attack its own healthy cells. It wasn’t just something I ate, it wasn’t going to just go away on its own, and it wasn’t my fault that it happened.

Although I was fortunate to respond well to the first biologic treatment I tried, my Crohn’s diagnosis came with other complications. The several weeks spent with untreated chronic inflammation and prolonged immobility led me to develop blood clots (deep vein thrombosis, aka DVTs) that also traveled to my lungs (pulmonary embolisms, aka PEs). I remember being hospitalized during my second quarter of undergrad, in the middle of midterms, and frantically emailing my professors for extensions as I was in the ICU.

About a month after my hospitalization, my hair began falling out in chunks. It felt like I had reached a new low, and I couldn’t recognize myself anymore when I looked in the mirror. Even though my Crohn’s was responding well to my treatment, the other comorbidities that came with it, though temporary, were just as difficult and scary to navigate. Throughout this period of time, I had somehow managed to continue being a student, attending lectures and discussion sections through Zoom during a COVID spike in California when students were given the option to attend classes either online or in person. However, as spring quarter rolled around, and students at my university were required to be back in person, I knew I wasn’t well enough to return to campus. I had to withdraw from the university for the quarter – a decision that wasn’t easy. Still being a student had felt like the last bit of normalcy in my life. Now, all I could focus on, all I had to focus on, was my health.

Throughout the spring and summer, things gradually got better. I had fully weaned off prednisone and was in remission with my biologic. I was able to eat again and my bowel habits were great. My blood clots were being monitored as I was on anticoagulant medication. I was going to physical therapy to relearn how to walk, and with every week, my gait looked and felt better. My steroid ‘moonface’ had subsided and finally, my hair started to grow back.

By the time fall came around, my health seemed to have made a miraculous comeback. All my labs were fantastic and my doctors told me that I was doing everything right. My friends and family would tell me how they had been thinking of me, praying for me, and how they were so happy to see me better. It made me feel proud of myself and my resilience. I felt grateful to be alive.

I started to prepare to go back to school after having been out for six months, which felt like a long time to me as someone who had always prioritized school and getting good grades since I was a child. I wanted to leave the dark period of my life I had just gone through behind – a period where I had felt so isolated, helpless, angry, depressed, and like I didn’t want to be here anymore. I wanted to move forward, to be normal again, to show everybody around me that I could overcome it all.

I started my second year of undergrad by enrolling in more classes than I had before and starting a new job. I went full-force back into the real world, feeling like I needed to make up for lost time. I didn’t want to keep feeling behind compared to my peers. Without realizing it, however, I was putting pressure on myself to be some sort of inspiration. I wanted to prove to myself that I could live the life I had envisioned, regardless of Crohn’s. For the first few weeks back at school, I was energized. Then, the workload I had set for myself became difficult to manage. I found myself coming back to the room I was renting with fatigue that I couldn’t just sleep off. Sometimes, my brain felt so foggy that I struggled to concentrate on my homework. I noticed I felt especially tired the day after my injection every two weeks. There were days when I would lie in bed and ruminate about everything I had gone through. Even though I was back in school, I had a job, and I could spend time with friends again, life still didn’t feel normal. I had a hard time completing tasks, staying motivated, and as the school year went on, my grades started to slip. I felt embarrassed that I was still having a hard time getting back on track. I still felt like there was a dark cloud looming over me most days, despite the fact that on paper, my physical conditions were under control. I hadn’t expected that even after the worst of it had passed, the trauma would still be there, and I would still grieve my old self before Crohn’s. While my doctors had equipped me with the treatments needed to manage my physical ailments, what l wasn’t prepared for was the effect being chronically ill would have on my mental health and well-being.

It took therapy, trial and error, attending peer support meetings, and time for me to get to a point where I recognized that it was necessary for me to scale back on how many units I was taking each quarter, and that it was okay to let others know I was struggling mentally and ask for help. The latter is still something I find challenging at times, but I’ve made progress and continue to work on it!

I’m not immune to bad days or weeks, but overall, I’ve managed to reach a point where I don’t always feel that shadow of sadness I did for a long time. Although the past few years may not have looked like what I expected growing up, I still managed to finish my degree in two different majors, not just within four years, but a quarter early! My first- or second-year student self would be shocked and perhaps not even believe it. My graduation ceremony was just a few weeks ago, and it prompted me to reflect on my journey of being diagnosed with Crohn’s as a young adult in college. 

My undergraduate years were full of life-changing experiences with lots of challenges. But I’m lucky that those years still gave me good memories to look back on and friendships that I anticipate will last for many years to come.

Over the past few years, I’ve grown more comfortable sharing my diagnosis and experiences with others. Having Crohn’s has made me more appreciative of the good times in life because I know good health and tomorrow are not always guaranteed. I’m also lucky to have found a community of people who understand the roller coaster that is living with IBD/a chronic illness. I hope that any other person going through something similar who may be reading this knows that they are not alone.

My progress hasn’t always been linear, but ultimately, I find myself at a place where I accept what life has thrown at me and where I recognize that I can and will be able to navigate life’s future hurdles. I surrender to the fact that I won’t always be able to control what comes next, but I know that difficult times will pass because they have before. I might not always have the answer to what the future has in store for me, but I know I’m proud of how far I’ve come and where I am today.