Michelle’s IBD “Burn Book”

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

A Mean Girls-style graphic on a bright pink background reads “Burn Book (IBD version).” It has doodles scribbled over the text, including drawings of intestines and the poop emoji.

Inspired by Mean Girls and high school yearbooks, I created an “IBD Burn Book” to shed light on the invisibility of IBD and emphasize the importance of empathy when interacting with someone with IBD.

A yearbook-style photo collage of Michelle smiling and looking happy, with phrases like “don’t worry about me, how are you?” and “class superlative: biggest yes person.” In the background are the repeating words “smiling, outgoing, healthy, strong, energetic, reliable, lucky, blessed, positive, spontaneous, daughter, friend, sister, student, advocate, outspoken, happy.”

When you first open the Burn Book, you’ll see that my “Mask” has been crowned Prom Queen. The images on this page are from moments when I had my mask on—when I pretended to be “fine.” The background words reflect how others perceive me more positively when I wear this mask, which is why it was elected Prom Queen.

A yearbook-style photo collage of Michelle looking tired in various medical settings (the hospital, getting infusions) with phrases like “don’t miss out or flake,” “nobody will accept you” and “patient presents with anxiety.” In the background are the repeating words “gross, liar, pity, ew, anxiety, hypocondriac, shame, lazy, your fault, too young, judgement, skinny, fat, weak.”

The next page is a Student Feature of my Inner Thoughts. Here, I am without my mask. This contrast serves as a reminder that appearances can be deceiving—what you see on the outside isn’t always real; it might just be a mask.

Michelle’s ‘not hot’ list has a pink background with white squares. The following phrases are X’ed out in red pen: “I don’t want to touch you,” “so you’ve got bad genes?,” “i could never live like that,” “you’re too young to be sick,” “at least it’s not cancer,” “you look like a holocaust survivor,” “i have IBS too!,” “have you tried yoga?,” “gross,” “It’s all the junk food you’re eating,” “look on the bright side, you lose weight easily,'“ and “i guess this means we’ll have to adopt.”

Following that is a Not Hot List, which consists of a collection of phrases people should never say to someone with IBD. (Sadly, every one of these remarks has been said to me).

A pink poster labeled “wanted: empathy.” In each square, there is a different phrase: “I believe you,” “I’m here for you,” “I love you,” “you’re beautiful,” “how can I help?,'“ “how did your procedure go?,” “how do you feel?,” “I want to learn,” “can I come with?,” “call me any time,” “you’re always invited,” “what are your dietary restrictions?,” “your struggle is my struggle,” “it has bathroom access,” “I researched IBD,” and “good luck with your infusion!.” The phrases are emphasized with stars, hearts, and stickers that read “100%!” “yes!” and “A+.”

The final page of the Burn Book is a WANTED poster—for empathy. Instead of harmful comments, this page lists empathetic phrases one should say to someone with IBD. Essentially, it serves as the “Hot List” in Mean Girls or high school terminology.

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Invisible illnesses come with their own set of challenges—such as a widespread lack of awareness—but the focus here is how easily someone with IBD can hide their struggles. Smiling through the pain, pretending to feel well—it becomes second nature. I’m not the first person to wear a “mask” to feel accepted or to make others comfortable, and I certainly won’t be the last.

The reality, though, is that IBD is a constant battle. Even if you see me dancing with friends, traveling, or enjoying a big meal, I am still struggling. The takeaway? You never truly know what someone else is going through, so always choose kindness. More importantly, choose empathy. If you do know what someone is going through (specifically IBD in this case), be especially mindful of your words and actions. While you might assume your words and actions don’t affect us, remember—we’ve had a lot of practice hiding our pain.

IBD and Grief

by Akhil Shridhar (Bengaluru, India)

A cup of coffee, a pen, and a napkin with the 5 stages of grief (denial, anger, bargaining, depression, and acceptance) sit on a blue table.

Each person has a unique story when it comes to their experience of coming to terms and living with IBD. What I realized after speaking to some of the patients who have struggled with the disease for quite a few years is that there is a similar pattern in our response to this life-altering event. The diagnosis, which in itself is a drawn-out process of striking out every other possible disease of the gut to finally settle on one condition, which includes countless blood tests, scans, endoscopies, colonoscopies with biopsies, like any other chronic condition, is just the beginning. When I came across the commonly used description for the stages of grief, I couldn’t help but notice the similarities.

The stages of grief are commonly described using the Kübler-Ross model, which outlines five stages that people often go through when dealing with loss or significant change. These stages are not linear, meaning people may experience them in different orders or revisit certain stages multiple times. The stages are Denial, Anger, Bargaining, Depression and Acceptance. With our diagnosis of a chronic condition, we experience a profound shift in reality that can evoke similar responses: 

Denial

Initially we struggle to accept the diagnosis, believing it to be a mistake or downplaying its seriousness. For most of us who are coming across IBD for the first time, usually without any family history, this sounds familiar. I would perhaps lean towards the latter, as a history of psoriasis, a similarly chronic condition, majorly influenced my decisions, which I would come to regret later.

Anger

As reality sinks in, we often have feelings of unfairness and frustration. This anger is usually targeted at our body, medical professions and, in most cases, our loved ones. I found myself feeling guilty of my circumstances, angry at the doctors for not understanding my concerns and addressing them, which feels ironic, and frustrated with my loved ones for downplaying the symptoms.

Bargaining

We then attempt to negotiate our way out of the situation, trying alternative treatments, lifestyle changes, or even stopping medications altogether. Due to my previous experience with psoriasis and other circumstances, I found myself slowly stopping medications. As expected, when the symptoms started flaring up again, I looked into alternative treatment that had shown good results for my psoriasis, a grave mistake which put me in the severe Crohn's category taking me years to recover from.

Depression

As we finally come to terms with the condition’s long-term implications, a sense of loss and hopelessness follows, leading to sadness, withdrawal, or a loss of motivation. Although with IBD being a disease of the gut, this just adds to the list of causes for depression for many of us.

Acceptance

Over time, we adapt and find ways to manage our condition and integrate it into our lives. We begin to accept the new normal and find strength and purpose in this new journey. Five years into this journey, I find myself here, a veteran I say to myself, with a new resolve to help others navigate theirs.

The emotional and psychological journey of adapting to a life-altering event closely resembles a grief-like path. Chronic conditions not only impact our physical health but also our identities, relationships, and goals, making the process of adjusting and coping essential. It's important to note that these stages are a framework, not a one-size-fits-all process. People grieve in unique ways, and other emotions like guilt, confusion, or relief might also play a role.

This is why advocacy can be an incredibly powerful tool to make a difference in helping individuals by providing awareness and education, building a resource network, or helping in accessing resources. It is also important that we encourage empathy and patience with caregivers, family members and society as a whole to provide the required support during these challenging times. For someone going through the journey, engaging in advocacy themselves can be transformative and empowering. On a larger scale, advocacy is also necessary for shaping policies and systems that lead to improved healthcare policies, workplace accommodations, or social programs.

I encourage everyone to seek help and, whenever possible, help out others, as getting diagnosed with IBD can be a deeply personal experience, but one should not be forced to navigate it alone.

(Image credit: marekuliasz from Getty Images)

Potential IBD Accommodations for Teachers and Students (from a NYS Teacher)

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

This infographic was created from discussions with other teachers in the United States living with IBD.  Through those conversations, I realized that the workforce can be a scary and precarious place for people living with chronic illness.  As a unionized, tenured teacher in a public school, I acknowledge I am in a privileged position to disclose my IBD.  However, a teacher or student can choose not to divulge their chronic condition for a number of reasons including job instability or the fear of being singled out.  I made half of my graphic focus on discreet ways to manage your IBD within the education system without revealing personal health information.  This half includes having an emergency supply pack, trusted contacts that you can call for assistance, and knowing the location of private bathrooms instead of public stalls. 

The other half of my picture illustrates ways a student with an IBD can pursue written accommodations to protect them at school.  These include obtaining an Individualized Education Program (IEP) or 504 Plan after their doctor writes a note confirming their diagnosis and its impact on the student's daily life.  In the student's records, they would be classified under the "Other Health Impairment" category and this form would be reviewed and adapted annually.  Parents, teachers, and district personnel would work together to create an IEP or 504 plan that supports the student's needs, helps them manage their illness, and works to reduce the student’s stress in an educational environment.  Teachers with an IBD can also present a doctor’s note to their district to receive reasonable workplace accommodations. 

Sky also belongs to the birds without wings

By Aiswarya Asokan (South India)

A group of birds flies over the ocean. A pastel blue, pink, and yellow dawn is in the background.

A couple of decades ago, when schools were shut for summer vacations, all the cousins returned to Grandpa’s house to spend the vacation. It was bedtime, and all the children secured their place in the bed, waiting for Grandpa to narrate a story before falling asleep. It goes: 

“Once upon a time, there lived birds without wings, which deprived them of the joy of flying freely in the sky and experiencing the vast beauty of sky and land. Therefore, it spends all its time in the land, trying hard to find its food and merely surviving.

This made the birds extremely sad, and it was believed God had cursed them. Time passed, and it became even more difficult to thrive, then God called them and ordered them to carry the weights of some more objects. Birds pleaded to the god to take these weights away from them, but he disagreed. At last, there was no other way other than to carry this burden.

But to the bird’s surprise, it started floating in the air; the weights that dragged it down were now enabling it to fly. What a pleasant surprise: the weights that caused a burden to the birds have transformed into wings. Only then did the birds realize the weight it carried this long has equipped it to fly high and conquer heights.” 

After all the fun and games and a cozy bedtime story, I dozed off to sleep but woke up abruptly with a bit of discomfort inside my tummy; I had to throw up immediately. Everyone had to wake up in the middle of the night and clean the mess; maybe my stomach was upset from something I ate the day before.

Such incidents occurred again and again, maybe vomiting or else diarrhoea, sometimes some uncomfortable feeling inside accompanied by headaches (later on I learned that these feelings can be named nausea, bloating, abdominal cramps, and heartburn…). I hated any kind of physical exertion, whether a dance class, sports, or walking; Physical Education periods were my worst nightmare. Getting into menarche doubled down the sufferings. I was always clumsy with things and had a lot of pain carrying stacks of notebooks from one classroom to another, carrying my school bag, and climbing stairs to reach the classroom. I used to pant like I had participated in a marathon after making it to the classroom each day. It even demanded a good deal of energy just to complete a proper head and body wash. I used to collapse into the bed after a proper shower. But how to gain some energy back? Okay, let us concentrate on food, but however you try to stuff yourself with food, it just bounces back, putting yourself in much more trouble. And visits to the doctor turned out to be a normal stunt just to repeat the cycle once again. Innumerable nights spent tossing to and fro in bed, squeezing the pillow, with frequent visits to the washroom in between, wondering when I could breathe in peace with a perplexed mind not knowing what’s going wrong. This is usually followed by a week where you have to live with an empty stomach if you need to forget the pain.

It is frustrating to navigate a life that is like walking over eggshells. Even the so-called happy normal days come with a lifespan of a firefly. It's so unpredictable, and all your efforts to mend it can go in vain. This leaves you with a heavy mind full of rage and despair. On the flip side, this journey gives you the resilience, endurance, and wisdom that no exams or university education can ever give you. Once you harness this energy, then the sky is your limit. It teaches you to be humble, empathetic, and to live in the moment. But still sometimes I feel deep inside Mother Teresa was right when she said, “The hunger for love is much more difficult to remove than the hunger for bread.”

Image from Unsplash.

Winds of Perseverance: The Crohn’s Chronicles

by Rifa Tusnia Mona (Dhaka, Bangladesh)

Four years ago, I first heard the term IBD. Before that, I had spent years trapped in a cycle of unexplained symptoms and misdiagnoses. Then, one doctor finally said it—a possibility that changed everything. That moment marked the beginning of a long, lone, challenging journey—one that has shaped me in ways I never expected.

Living with Crohn’s disease hasn’t been easy, especially in a society where few understand it. My family had never heard of it. Neighbors mistook it for a simple gastric issue. Friends casually referred to it as an ulcer. Over time, I found myself explaining my condition again and again, trying to make sense of it for both myself and others.

It was during this confusing time that I found comfort in unexpected places.

Chad, Pete Davidson, and the Art of Indifference

I’ve always loved watching Saturday Night Live, especially the Weekend Update and parody commercials. But after my diagnosis, I found myself particularly drawn to one character—Chad, played by Pete Davidson. Chad never reacts to anything with more than a casual “Okay” or “Cool”. His simplicity and indifference fascinated me. Most importantly, it sort of aided me whenever I got tired while explaining my condition or responding to stigmas. Watching Chad made me realize that not every question deserves a long, exhausting answer—sometimes, a simple response was enough. Realistically, it saved my valuable energy.

Then, I discovered something else—Pete Davidson himself has Crohn’s disease. Watching him use comedy to talk about his struggles, even the painful ones, gave me a new perspective. He didn’t let his illness define him. Instead, he turned it into a story—one he could laugh about. That idea stayed with me.

MrBeast, A Semicolon, and a Shift in Perspective

My symptoms flared up in 2019, just as I was stepping into my role as an environmentalist, organizing startup competitions, and representing my university at environmental fests. Suddenly, everything I had been building felt uncertain. It was as if life had placed a semicolon in my path—not a full stop, but a pause, forcing me to adjust. Throughout the rest of my university moments, I was on the verge of dropping out several times.

That’s when I came across MrBeast’s story. I learned, he, too, has Crohn’s. In one of his videos, he shared how he learned to manage his illness by changing his mindset—choosing to focus on what he could do instead of what he couldn’t. That struck a chord with me. I realized that, like him, I could try turning my struggle into a strength. 

Whenever pain came, I tried shifting my focus. Instead of asking, Why me?, I reminded myself that others might be facing even greater hardships like terminal illnesses. At least I am not dying—that was something to be grateful for. To save myself from stress-induced abdominal cramps, the idea acted like armor.

A Win That Came with Questions

This year, for the first time in five years, I received genuinely good news: I was awarded a scholarship to study my dream subject for my master’s. Out of thousands of applicants worldwide, only 100 women were chosen. I was overjoyed.

But when I shared the news, many people responded with an unexpected question: "Don’t they ask for a medical clearance?"

It made me wonder—how many others have felt the weight of these doubts? How many have been made to feel like their dreams should be measured against their diagnosis?

This article is for them.

To those fighting this invisible battle, I want you to know that your struggles do not define your capabilities. The world may doubt you, but that can be freeing. If you succeed, great. If you don’t, they never expected you to anyway. Either way, you win.

As someone fighting such stigmas in everyday life, I know how vital IBD advocacy is! So, a heartfelt thank you to CCYAN for giving me this space to share my journey—and to you, my dear reader, for walking this path with me. Keep going—You’re stronger than you think.

Linked videos:

Chad Horror Movie - SNL © Copyrighted by Saturday Night Live

https://youtu.be/fF6gExZu-2M?si=iW30vRB3rx-B41mG

What is Crohn's Disease????? © Copyrighted by MrBeast

https://youtu.be/pzlPJmNyepA?si=DlMUgnyYB4Gwxh8S

Featured photo by Life Of Pix from Pexels.

Battling an invisible illness while everyone else plays “doctor”

by Beamlak Alebel (Addis Ababa, Ethiopia)

A person with medium tone skin and chin-length black hair stands behind a clear bubble. Their hands are pressed against the glass, as if they want to get out.

Exams are already stressful, but for those of us dealing with invisible illnesses, they can feel like an impossible battle. The pressure to perform, sleepless nights, and depression don't just affect our mind - they also affect our whole body too: and while we struggle through the pain, others think they have all the "expert" answers:

My Brother wonders, "maybe it is some unknown disease science hasn't discovered yet."

My Parents think, "it must be setan (evil spirit), we should take her to holy water."

Society assumes, "it's probably caused by her poor lifestyle or malnutrition."

Meanwhile, I am just trying to survive this exam while everyone else plays doctor.

The silent struggle of invisible illness

Living with IBD means battling symptoms that others can't see. It is a constant storm - worsening digestive system, gut motility issues, poor sleep, and one of the biggest triggers, stress. 

Exam deadlines and academic pressure can make symptoms flare up. But instead of understanding the real impact of stress on chronic illness, people jump to conclusions. They blame supernatural forces, poor diet, or anything except the real medical condition.

Why awareness really matters 

The truth is, many people don't understand invisible illness until they (or someone close to them) are directly affected. This lack of awareness leads to stigma, misdiagnosis, and people suffering in silence. We need more conversations about IBD not just in medical communities, but also in everyday life.

Invisible illnesses like IBD can be incredibly tough. Friends and family should understand that IBD is a serious, life-threatening condition, and many factors outside our control can trigger painful flare-ups. Other people's misconceptions about IBD just add to our stress as patients...so if stress is a known trigger, we need to address these misunderstandings! 

This is why it is important to raise awareness, have discussions, and help others recognize the impact that IBD has on us. 

Because we know invisible illnesses exist, so why do we keep doubting those who live with them?

Instead of playing doctor, maybe it is time we start listening.

(Image from iStock, credit: nadia_bormotova)

Navigating the "Why Me?" Season of Chronic illness

Yeabsira Taye Gurmu: Addis Ababa, Ethiopia

The "Why Me?" season of my journey with Inflammatory Bowel Disease (IBD) was one of the most challenging times in my life. The onset of symptoms—unrelenting abdominal pain, fatigue, and unpredictable bowel movements—left me feeling lost and overwhelmed. Each doctor's appointment felt like a new hurdle, as I faced uncertainty and often dismissed concerns. The emotional weight of confusion, fear, and frustration was heavy, making it difficult to envision a future where I could manage this condition. It was a time filled with questions but few answers, leaving me grappling with the reality of my health.

For new patients experiencing a similar phase, it’s essential to understand that these feelings are normal and part of the diagnostic journey. Expect to encounter a mix of emotions, from denial to anger, as you seek answers. It’s crucial to advocate for yourself and seek support, whether through online communities or professional help. Keeping track of symptoms and preparing questions for your healthcare provider can empower you during appointments, helping to clarify your condition. Remember, this stage is often a tumultuous path toward understanding, and it’s okay to feel vulnerable as you navigate it.

Transforming the "Why Me?" phase into a positive, lifelong attitude is possible. Embrace the challenges as opportunities for growth and self-discovery. Focus on education about your condition, which can demystify the condition and foster a sense of control. Surround yourself with supportive people who uplift you and understand your journey. By practicing self-care and maintaining a proactive mindset, you can turn this difficult chapter into a foundation for resilience and empowerment. Ultimately, this experience can lead to a fulfilling life with your chronic condition, marked by hope and a renewed sense of purpose.

Featured photo by Disha Sheta from Pexels.

Fighting, Grieving, and Enduring Entropy

By Zahraa Chorghay, Montréal

Trigger warning: mental health, death

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In a universe of entropy, living with a chronic illness has meant surrendering control and expectations of stability to give myself the gift of being more flexible and adaptable, and thus, more resilient. This transition isn’t an easy process, particularly for someone like me: an elder daughter of the diaspora fed on a steady diet of validation for professional accomplishments. Unlearning harmful ableist notions of success and well-being has been a challenging journey spanning years — and one that is and will be ongoing throughout my lifespan.

Crafting this last official piece of content as a fellow for this Young Adults Network for people with IBD (inflammatory bowel disease), I am moved to reflect on my transitions, particularly over this past year as a CCYAN Fellow. When I applied to the CCYAN fellowship a little over a year ago, I knew what I was looking for: a space to connect with others like me, and a platform to advocate about IBD. My tenure with CCYAN certainly fulfilled both of the needs, and more. I engaged with IBD research, attended meetings in the broader health policy and scientific community, facilitated peer support meetings, and became part of a community I hope to continue with for many more years. But the joy and learning from being in the CCYAN community was just a fraction of life. 

In reality, 2024 was a year of great turmoil. Geopolitically, yes, and also, personally.

The beginning of my year was marked with illness. By February, after an incredibly fun winter chalet weekend with some of my closest friends, I found myself in the emergency room of a hospital. Diagnosis: severe anemia. Solution: a blood transfusion. (You can read more about that here.)

The following week, I was slated to fly to California for an interview, so I did. That went well enough that a couple of months later, I left my stable corporate job and packed my bags for a permanent move across the continent. After my PhD, I had taken a protracted hiatus from my passion, neuroscience, so I was thrilled to be returning as a postdoctoral associate (“postdoc”) in a brand new lab in the Golden state. 

The move was tough. Moving to a new country means starting from scratch. Logistically, I had to get all my documents in order, deal with banks, find housing with no credit history, and navigate an entirely different healthcare system. Socially, I had to make friends and deal with the profound sense of missing everyone back home. (You can read more about that here.) But I was there to advance my career, and I obstinately held on to that goal. I had to learn many new things, and under a completely different management style than I had previously encountered. So I dove into the scientific literature, asked for help from my supervisor and colleagues, and practiced my techniques. Everytime something went wrong, I came back to the lab, working even longer and harder to make sure I could improve. I would stay late often enough that one of my favourite colleagues became the night-shift janitorial staff member. (She would often pass by me and say, “Keep working hard, girl!”)

Despite my resolve, I struggled. I wasn’t ready to give up, but the combination of suboptimal conditions affected me deeply. I’d return to my sparsely-furnished apartment at the end of each day too exhausted to do anything but eat a quick dinner and lie down, while having that sinking feeling that I had nonetheless missed the mark at work. I was living in a beautiful city with perfect weather and the vast ocean in the peak of summer, but I scarcely had the energy or capacity to enjoy it. My appetite, sleep, and energy levels were all affected, and I knew my stress could cascade into a Crohn’s flare before I knew it. I was taking everything I had unlearned about ableism and notions of success, and learned about IBD, work-life balance, and myself over the last decade, and tossing it out the window.

And as a result, I was drowning. The more I struggled to keep swimming, the more salty water I was intaking. The only times I came up for air were when visitors from home flew to California to spend time with me, showing me glimpses of the person I once was and could be.

Then, I received a text from my father. Inna lillahi wa inna ilayhi raji'un (To God we belong and to Him we return) — a prayer for the deceased. Unable to believe the words that followed, I called him immediately. 

Baji Ammi had passed away.

In English, Baji Ammi translates to Sister Mother, and that is perhaps a better description than the vague, distant, and altogether inadequate word, “aunt,” that the language would otherwise designate. Her death was sudden, as she had been an otherwise active woman in her early sixties. Her death was devastating, as she was the kind of person who gave unconditional love to whomever was so fortunate as to be in her orbit. 

Everything blurred together in the hours and days after this news. Grief became giant convection currents rippling through the mantle, forever shifting the tectonic plates of my life: I was forced to face myself. Ultimately, I quit my postdoc and returned home to Canada. Now, I am trying to figure out what comes next, while dealing with logistics and processing grief.

A year ago, I couldn’t have imagined that I would move across the continent only to move back, or that I’d pursue a postdoc only to leave it within a few months, or that I would never see my kind, beautiful, witty Baji Ammi ever again. And despite the overwhelming grief of dreams and of life extinguishing, I have also been incredibly fortunate (aA) to have unwavering love and support to move through this grief. I’m glad I also had CCYAN throughout this tumultuous year, getting and giving support to our incredible community. 

In a universe of entropy, of constant turmoil and loss, I suppose life endures.

My Journey of Advocacy as an IBD Patient in Africa: A Medical Student's Perspective

By Yeabsira Taye Gurmu, Addis Ababa, Ethiopia

As an IBD patient living in Africa and a medical student preparing to become a doctor, I have come to deeply appreciate the importance of advocacy. Living with a chronic illness can often feel isolating, especially in a context where awareness about conditions like IBD is still developing. Through my own journey, I’ve realized that advocacy is not just about raising awareness; it’s about creating a sense of community and support that can make a significant difference in the lives of those affected by IBD. However, I’ve also learned that it’s crucial to balance this advocacy with my need for personal peace and maintaining my boundaries.

In my efforts to advocate for IBD awareness, I’ve found that it’s essential to be selective about what I share. While my experiences can help others understand the challenges of living with IBD, I’ve recognized that I don’t have to disclose every detail of my journey. Setting clear personal boundaries allows me to engage in advocacy without compromising my emotional well-being. For example, I choose to focus on the broader message of understanding IBD rather than delving into the more painful aspects of my experience. This approach not only protects my mental health but also helps me stay purposeful and impactful in my advocacy work.

I’ve also learned the importance of self-care while engaging in advocacy. It’s vital for me to participate in discussions and support groups at a pace that feels comfortable. Sometimes, this means stepping back and taking time for myself to recharge. I’ve found that when I prioritize my well-being, I can engage more authentically and passionately in my efforts to raise awareness for IBD. Encouraging others to find their own balance has become a priority for me, as advocacy is most effective when it aligns with our personal values and comfort levels.

By sharing my experiences thoughtfully and prioritizing my well-being, I can contribute meaningfully to the conversation around IBD without losing sight of my own needs. As I continue my medical training, I aspire to inspire my peers to embrace the significance of patient-centered advocacy. Each voice is important, and together we can foster a supportive environment that not only raises awareness but also honors the individual experiences of those living with chronic illnesses like IBD.

Featured photo by Steve Johnson on Unsplash.

The Never-Ending Cycle of IBD

By Selan Lee from the United Kingdom

Many things in life are cyclical: the seasons, fashion trends, and the moon’s phases. The one thing we all hope isn’t cyclical is illness. Who wants a never-ending cycle of health and disease? But for those who are chronically ill, it is an unfortunate truth that I previously thought I had accepted - until three months ago.

Three months ago, the symptoms that had started it all returned: frequent diarrhoea, bloating, gas and nausea. In retrospect, stress seems to be a determining factor in my cycle of Crohn’s. My first flare was during the final months of my A-levels - a set of exams that would determine my future according to my 18-year-old self. My second and current flare began two weeks before my graduation and coincided with the final interview for a job I desperately wanted to pass. Unfortunately, the consequences of the stress-inducing circumstances were also cyclical. I severely underperformed in my exams and panic-attacked my way to a re-sit the following year. I didn’t pass the interview and was faced with ending university without a stable job to move on to. Healthwise, like the first flare, I was admitted to the hospital soon after graduation.

Maybe because I had experienced five years of relative good health since my diagnosis, I thought I had accepted the chronic nature of Crohn’s. Despite becoming resistant to a few biologics - I went to university, sourced and worked in a consultancy for my placement year, attended my first concert, joined a panel for young adults with IBD and was able to socialise with friends and family without much concern. My brief period of normalcy had blinded me to the fact I hadn’t really accepted the cyclical nature of my condition, and to be honest, no one with IBD or a chronic illness does.

I remember when someone asked during a panel how people with IBD cope, and the members and I all said hope helped us to cope. Naively, I equated coping with accepting. That’s far from the truth. I can cope with my biologic no longer working as there will be another one. I can cope with waiting for the night shift doctor to prescribe paracetamol for my abdominal pain. I can cope with forgoing foods and situations that will worsen my IBD. But I can’t accept that this will happen again. Understanding and coping are one thing, and acceptance is another.

How can I accept that I will progress through life feeling alone because of my IBD? Like I am sitting on an ice floe floating past all of life’s possibilities. Maybe it is pessimism talking, but living with IBD can be akin to the myth of Sisyphus. Many of us will spend our lives pushing the boulder of IBD to remission - with some, like me, falling back to flare. But maybe, in the words of Albert Camus, I will achieve happiness in this absurd repetition and be satisfied regardless of the outcome. Then again, Captain Raymond Holt says, “Any French philosophy post-Rousseau is essentially a magazine.” [1] - so I will wallow in my pessimism for a while. I might be able to see the brighter perspective of Camus and Terry Jeffords once my new meds prove to be successful.

References

1. “Brooklyn Nine-Nine” Trying (TV Episode 2020) - IMDB. (n.d.). IMDb. https://www.imdb.com/title/tt10322288/characters/nm0187719

Featured photo by Frank Cone from Pexels.