Living With Crohn's Disease as an Invisible Disability
Author: Rifa Tusnia Mona
Published: 16 Oct 2026
Publication Type: Submitted Article
Table of Contents:
Synopsis - Definition - Overview - FAQs - Insights, Updates - Related Content
Synopsis
This information is a first-person account by a graduate student from Bangladesh who was diagnosed with Crohn's disease five years ago and describes how a chronic, immune-driven inflammatory bowel condition shaped her education, finances, family life, and hopes for a career in hydrogeology. Drawing on guidance from the National Institutes of Health, a large systematic review in The Lancet, and recent workplace research in the Journal of Business and Psychology, she connects her own experience to wider evidence on where inflammatory bowel disease is most common and why people with invisible disabilities often struggle to be believed at school and at work. Her story shows how a fully funded fellowship, help from a patient organization, and access to immunosuppressive treatment in Europe made daily life manageable again, while also showing how fragile that progress is when it depends on insurance coverage, visa timelines, and employer attitudes. The account is useful for patients, caregivers, educators, employers, and policymakers because it puts a human face on the gap between disability inclusion as a stated value and the practical support that people with chronic illness, from young adults to seniors managing long-term conditions, actually need.*
At a Glance
- 1 - Only 100 women from 89 IAEA member states received the fellowship in the author's selection round.
- 2 - One of the author's immunosuppressive injections costs about 576 euros in Germany, and she needs two each month.
- 3 - Ng et al. reported the highest Crohn's disease prevalence in Germany at 322 cases per 100,000 people, followed by Canada at 319 per 100,000.
- 4 - Crohn's disease incidence is rising in newly industrialized countries, with yearly increases of 11.1 percent in Brazil and 4.0 percent in Taiwan, while rates in many Western nations have leveled off or declined.
Topic Definition
- Crohn's Disease
Crohn's disease is a long-term form of inflammatory bowel disease in which the immune system drives ongoing inflammation in the digestive tract, most often at the end of the small intestine and the beginning of the colon, although it can affect any area from the mouth to the anus. The inflammation can extend through the full thickness of the bowel wall and tends to appear in patches, which sets it apart from ulcerative colitis, a related condition limited to the inner lining of the colon and rectum. Common symptoms include abdominal pain, diarrhea, fatigue, weight loss, and reduced appetite, and they usually come and go in cycles of flares and remission. There is no cure, but corticosteroids, immunomodulators, biologic drugs, and surgery when needed can control inflammation and help many people study, work, and live with fewer interruptions. Because its symptoms are often hidden from others, Crohn's disease is widely recognized as an invisible disability.
Overview
Monument of Solidarity
When I was in college, I was always the first to notice the arrival of spring. The young leaves emerging from bare branches, quietly announcing the end of winter and spreading their vibrant shades of green, seemed truly mesmerising.
Spring always came after winter. That was the natural order of things. No matter how long or harsh the winter seemed, spring would eventually return.
Until one day, it didn't.
There came a time in my life when winter seemed to stretch endlessly. The colours of spring began slipping through my fingers, slowly and almost imperceptibly, until one day, they disappeared altogether.
I often wonder how a human soul can freeze while the body remains alive.
Sadness, happiness, excitement, affection, joy, even disappointment: these are the colours that make up the spring of the human mind. They remind us that we are alive, that we can feel, and that we can hope. But what happens when those colours begin to fade? How does a person continue living when even the simplest emotions become difficult to experience?
Well, if you happen to be a Crohn's disease patient like me, the answer is rather complicated. You learn to be careful with your emotions, even the happy ones. Too much sadness, too much excitement, or simply feeling overwhelmed can come at a physical cost. Stress and emotional upheaval can aggravate symptoms, and sometimes all it takes is an overwhelming moment to leave you curled up with abdominal cramps. It is almost as if your body has decided that feeling too much of anything is an unnecessary luxury.
Imagine having to remind yourself not to get too happy about something wonderful happening in your life.
It sounds ridiculous, doesn't it?
Unfortunately, my intestines don't seem to have much of a sense of humour.
Five years ago, I was diagnosed with Crohn's disease.
According to the National Institutes of Health (NIH), Crohn's disease is a chronic inflammatory condition in which an abnormal immune response causes inflammation in the digestive tract. Although it most commonly affects the small intestine and the beginning of the large intestine, it can involve any part of the gastrointestinal tract, from the mouth to the anus.
That is the medical definition.
As a patient, I would describe it somewhat differently.
It is a disease that may not kill you immediately but can make living extraordinarily difficult.
The abdominal cramps interrupt the rhythm of ordinary life. The fatigue consumes whatever energy remains. The unpredictable symptoms make planning even the simplest activities a challenge. And because the disease is chronic, there is no definite end to anticipate. Eventually, the suffering becomes something you are expected to accept as part of yourself.
There is something deeply unsettling about knowing that the very system designed to protect your body has become a source of its suffering. The immune system, our evolutionary shield against threats, becomes involved in a continuous inflammatory process that damages the body it was meant to defend.
And somewhere in that continuous struggle, the person living inside that body begins to disappear.
The Geography of Misfortune
Crohn's disease is not equally prevalent across the world.
A systematic review by Ng et al. (2017), examining 147 population-based studies, including 119 on incidence and 69 on prevalence, identified considerable geographical differences in the distribution of the inflammatory bowel disease (IBD) group, consisting of both Crohn's disease and ulcerative colitis.
The highest reported prevalence of Crohn's disease was observed in Germany, with 322 cases per 100,000 people, and Canada, with 319 cases per 100,000. For its nearest disease relative, ulcerative colitis, the highest reported prevalence was recorded in Norway and the United States, at 505 and 286 cases per 100,000, respectively. Overall, IBD prevalence exceeded 0.3% in North America, Oceania, and several European countries.
Although incidence rates have stabilised or declined in many established Western populations, they have been increasing in newly industrialised countries across Africa, Asia, and South America. For example, the annual percentage increase in Crohn's disease incidence was reported as 11.1% in Brazil and 4.0% in Taiwan (Ng et al., 2017).
In other words, Crohn's disease has historically been more prevalent in wealthier, industrialised countries.
Unfortunately, I was not that lucky 'geographically'.
I was born in Bangladesh, where not many people know this condition. Bangladesh, a South Asian country where access to healthcare is still heavily influenced by a family's financial capacity. Unlike many European countries, Bangladesh does not have a comprehensive public health insurance system that protects people across all socioeconomic backgrounds from the financial consequences of chronic illness.
I came from a middle-class family. I had a relatively uncommon and expensive disease. And I was the daughter of a father who regarded the responsibility of caring for his sick daughter as a burden.
The illness was difficult enough. The circumstances surrounding it made survival an entirely different struggle.
I learned that being sick was one thing. Being sick while still insisting on having ambitions, independence, and a voice of your own was something else entirely.
Apparently, it is acceptable to be a patient, but being a 'Patient with Backbone' is a sin.
The Decision to Gamble with My Life
I have always admired Steve Jobs.
In his 2005 Stanford commencement speech, he spoke about dropping out of Reed College partly because he could not see the value of spending his parents' savings on an education he was uncertain about.
I remembered that speech during a particularly dark period of my life.
For nearly two years, I spent most of my days confined to bed, staring at the same white plastered ceiling.
I was no longer simply a student, an eldest daughter, or a young woman with ambitions. I felt that I had become a financial responsibility, an inconvenience, and a burden whose existence required justification.
I kept asking myself whether it was worth continuing to fight for a future that seemed increasingly impossible.
If Steve Jobs could leave college because he did not want to keep spending his parents' money, why couldn't I find a way to free my family from the financial burden of my illness?
But I did not want to abandon my education or surrender whatever dreams I had left.
I wanted a chance to support myself, to live with dignity, and to become someone whose identity extended beyond a medical diagnosis.
I had never been comfortable living under the weight of other people's pity anyway.
So I decided to take a gamble with my life.
I began applying for fully funded master's scholarships in Europe.
On paper, I was hardly an ideal candidate. My undergraduate education had been interrupted repeatedly by illness. I had barely managed to avoid dropping out, and my academic results reflected years of struggling simply to remain enrolled.
My GPA was modest, particularly compared with the academic records of students competing for prestigious international scholarships.
I also had no financial safety net.
I could not afford tuition fees, living expenses, international travel, or private health insurance. A partial scholarship would not be enough. I needed full tuition support and a stipend that would allow me to survive independently.
Given the competition, the possibility of receiving such an opportunity seemed almost miraculous.
And then, something extraordinary happened.
I was awarded a Marie Sklodowska-Curie Fellowship through the International Atomic Energy Agency (IAEA) to pursue an Erasmus Mundus Joint Master's programme. The fellowship provided full tuition support and some stipend.
Now, remember what I mentioned earlier about being careful with emotions when you have Crohn's disease?
Apparently, that warning applies to good news as well.
When I received the fellowship announcement, I was so overwhelmed with excitement, disbelief, and happiness that my digestive system seemed to take personal offence. I couldn't eat properly for three days.
Three days.
After years of struggling, I had finally received what felt like a once-in-a-lifetime opportunity to survive, and my body decided that the appropriate way to celebrate was to declare a temporary shutdown of its digestive operations.
The irony was almost comical. I had spent years dreaming of an opportunity that might allow me to live independently, and when it finally arrived, I couldn't even celebrate with a proper meal.
Such is life with Crohn's disease. Sometimes, even happiness comes with abdominal cramps.
But for once, I didn't mind the irony quite so much. Beneath the physical discomfort was something I had not allowed myself to feel in a very long time.
Hope.
I had also previously been associated with CCYAN, a patient organisation supporting young adults living with inflammatory bowel disease. When I received the fellowship, CCYAN helped cover my travel and health insurance expenses.
For the first time in years, the possibility of building an independent life no longer seemed entirely imaginary.
I was going to Europe.
A Life Made Possible by Medicine
It has now been a year since I arrived in Europe.
My doctors started me on immunosuppressive treatment, including regular injections. With access to appropriate medication, studying and managing everyday life became possible again.
Not effortless. Not painless. But possible.
There is an enormous difference between being able to function and being free from illness.
I still experience pain, fatigue, uncertainty, and the limitations imposed by my condition. Even carrying a laptop can sometimes feel like an unreasonable physical demand. Activities that appear ordinary to others may require careful planning, and there are days when my body refuses to cooperate with even the simplest plans.
Then there is the social dimension of having what is commonly described as an invisible disability.
People often struggle to understand limitations they cannot see. If I appear healthy, there is an expectation that I should be able to perform like everyone else. If I cannot, the explanation is not always believed or accepted.
Misunderstanding, stigma, social exclusion, and the constant pressure to justify one's limitations can become additional burdens on top of the illness itself.
Nevertheless, I try to remain hopeful.
Medical treatment has given me back a degree of independence, but it has also made me painfully aware of how much that independence depends on access to healthcare.
One of my immunosuppressive injections costs approximately 576 euros in Germany, and my treatment requires two injections each month.
For patients covered by Germany's statutory health insurance system, most of the medication cost is generally covered, subject to applicable patient contributions. However, international students relying on private health insurance may face uncertainty over whether such expensive, ongoing treatment is included in their coverage.
And when your ability to study, work, and live independently depends on receiving that treatment, insurance is no longer merely an administrative matter.
It can determine the course of your entire life.
The Invisible Cost of an Invisible Disability
The challenges of living with Crohn's disease do not end when the symptoms become manageable.
The disease follows you into classrooms, laboratories, workplaces, social gatherings, and even professional interviews.
In a paper published in the Journal of Business and Psychology, titled 'Not an Ideal Worker, Not a Disabled Worker: The Experience of Disclosing Invisible Disabilities at Work', Mastrella et al. (2026) examined the experiences of employees who disclose invisible disabilities in professional environments.
Their research highlights the difficulties surrounding disability disclosure, particularly when health conditions may affect workplace performance but are not immediately recognisable to others.
This is a reality I understand all too well.
An invisible disability places a person in a peculiar position. You may not appear disabled enough for others to recognise your limitations, yet you may not be physically capable of meeting the expectations placed upon a supposedly healthy person.
You are expected to explain yourself repeatedly.
Why are you tired? Why do you need time off? Why can't you carry something? Why can't you attend an event? Why are you not performing at the same level as everyone else?
And sometimes, even after explaining, you are not believed.
There are limits to how often a person can explain their suffering before the act of explanation becomes another form of exhaustion.
I know how difficult it is to maintain an on-site job while living with Crohn's disease. Pursuing a demanding international master's programme brings its own challenges, particularly when health complications, academic expectations, financial uncertainty, and immigration requirements must all be managed simultaneously.
The scholarship gave me an opportunity, but it did not eliminate the structural disadvantages associated with my illness.
Nor does academic achievement guarantee that those disadvantages will disappear when I enter the job market.
When Survival Is Not Enough
I study groundwater, and I hope to become a hydrogeologist after completing my master's degree.
I want to contribute to the understanding and protection of water resources with the use of stable isotopes. I want to use my education to do something meaningful for people and the environment.
These may sound like ordinary ambitions.
For me, they are the reason I kept going when almost everything in my life seemed to be telling me to stop.
I am deeply aware of how unlikely my opportunity was.
Only 100 women from 89 IAEA member states were awarded the fellowship in the selection round through which I received mine. Somehow, despite my interrupted education, modest academic record, and difficult personal circumstances, I became one of them.
I am grateful for that opportunity.
But gratitude does not prevent me from recognising how much my future depended on circumstances beyond my control.
What if I had not received the fellowship?
What if CCYAN had not helped me travel?
What if I had not found doctors who could provide appropriate treatment in Europe?
I would probably still be in the same room, looking at the same ceiling, trapped inside a body that had turned ordinary life into a daily struggle.
And I wonder how many other young people with chronic illnesses are living that reality right now.
How many have the ability, curiosity, and determination to contribute something valuable to the world but never receive the opportunity to demonstrate it?
How many promising students abandon their education because medical treatment is unaffordable?
How many capable professionals never enter the workforce because their bodies cannot meet conventional expectations of productivity?
How many dreams disappear quietly, not because the dreamers lacked potential, but because surviving consumed all the resources they had?
My fields of study and illness may seem entirely unrelated. Groundwater science has little to do with gastroenterology. Yet my opportunity to become a hydrogeologist has depended on the affordability of medication, the accessibility of healthcare, and the willingness of institutions to support someone living with a chronic disease.
That connection is easy to overlook.
And it becomes even more frightening when I think about what comes next.
If I fail to find employment within the limited period available after graduation, I may be forced to return to Bangladesh.
Then, the independence I have fought so hard to build till now could disappear.
After years of pain, uncertainty, and struggle, I could once again be regarded as a 'lost cause'.
The possibility is just so difficult to accept.
Not because I believe that my suffering entitles me to success, but because I know how much effort it has taken simply to reach a point from which I can compete for an ordinary future.
I do not expect the world to reward me for being ill.
I only wish that illness did not make the opportunity to live, study, and work with dignity so difficult to obtain.
A World That Sees Difference but Remains Indifferent
People often say that the world has become more accepting of differences.
We speak about inclusion, diversity, accessibility, and equal opportunity. Institutions publish commitments to supporting people with disabilities. Employers increasingly acknowledge the importance of inclusive workplaces.
These developments matter.
But I often wonder whether being more open to people who are different has necessarily made us less indifferent to their struggles.
Recognition alone does not pay medical bills. Encouragement does not replace appropriate treatment. And sympathy, however sincere, cannot compensate for the absence of opportunities.
I have spent years trying to prove that I am more than my illness.
Yet there are moments when I cannot help wondering what I could have accomplished if I had access to the same physical strength, concentration, and freedom from pain that many people take for granted.
I have managed to come this far while operating within the limits imposed by my body.
What might have been possible without those limits?
Perhaps I could have done more.
Perhaps I could have studied harder, worked longer, explored more, or contributed to research in ways that I cannot currently imagine.
Or perhaps I would simply have enjoyed being young, without having to measure every ambition against the physical cost of pursuing it.
I will never know.
And what troubles me most is that there are countless others whose potential may remain equally undiscovered.
The world rarely notices possibilities that never have the chance to become achievements.
It celebrates those who overcome extraordinary obstacles but often forgets those who face the same obstacles and do not make it through.
Their stories seldom become inspirational speeches. Their names do not appear on scholarship announcements or graduation certificates. Their contributions remain hypothetical, their ambitions unfulfilled.
But their dreams were no less real.
The Monument of Solidarity
A friend of mine proposed an idea last week that stayed with me.
He said that if he ever became successful enough, he would build a monument dedicated to people like us.
Not to famous scientists, political leaders, or celebrated historical figures.
It would be a monument for those who dreamed of doing something meaningful but never received the chance.
For students whose education ended in hospital rooms.
For young professionals whose careers were interrupted by illness.
For people who had ideas, abilities, and ambitions, but whose potential remained hidden beneath circumstances they could not control.
For those who were underestimated, misunderstood, and slowly forgotten.
For those who spent so much of their strength trying to survive that they had little left to offer the world, even when they desperately wanted to.
He would call it the 'Monument of Solidarity'.
I find something profoundly beautiful about that idea.
Most monuments commemorate what people have accomplished.
This one would commemorate what people might have accomplished, had the world given them a fair chance.
It would honour the invisible efforts, the unfinished journeys, and the dreams that never found their way into reality.
Perhaps that is what solidarity should mean.
Not merely admiring the resilience of those who survive, but recognising the circumstances that prevent so many others from surviving with dignity.
Not waiting for someone to achieve something extraordinary before deciding that their life and ambitions deserve to matter.
And not confusing a person's inability to succeed under impossible conditions with a lack of worth or potential.
I still think about spring.
About those young green leaves I used to notice before anyone else. About the certainty with which I once believed that every winter would eventually come to an end.
I no longer believe that spring arrives automatically for everyone.
Some winters last longer than anyone should have to endure. Some people spend their entire lives waiting for warmth that never comes.
But perhaps solidarity begins when we stop telling those people to wait for spring and start asking what we can do to help them reach it.
Because every human being deserves more than the chance to survive winter. They deserve the chance to experience spring.
And if the world cannot yet offer that chance to everyone, perhaps the least it can do is remember those who were denied it.
That is what the Monument of Solidarity would stand for.
Not just the lives that were lived, but the lives that could have been.
Frequently Asked Questions
NOTE: Researched FAQs by Disabled World (DW)
Is Crohn's disease considered a disability under the Americans with Disabilities Act?
It can be. Since the ADA Amendments Act of 2008, the law covers major bodily functions such as digestive and bowel function, so a person whose Crohn's disease substantially limits those functions, even if only during flares, is generally protected and may request reasonable accommodations at work.
What workplace accommodations help people with Crohn's disease?
Common options include a workspace close to a restroom, flexible start times, extra or longer breaks, the ability to work from home during flares, and time off for medical appointments or infusions. The Job Accommodation Network offers free guidance to both employees and employers.
Can college students with Crohn's disease get academic accommodations?
Yes. In the United States, Section 504 of the Rehabilitation Act and the ADA apply to most colleges, and students can register with the campus disability services office to arrange options such as flexible attendance, breaks during exams, extended deadlines, and seating near an exit.
Does stress cause Crohn's disease?
Stress is not considered a cause of Crohn's disease, which develops from a combination of genetic, immune, microbial, and environmental factors. However, many patients find that psychological stress can worsen symptoms or coincide with flares, so stress management is often part of overall care.
Is Crohn's disease hereditary?
Genetics play a role but do not decide who gets it. Having a parent, sibling, or child with inflammatory bowel disease raises a person's risk, and researchers have linked more than 200 gene regions to IBD, yet most people who carry these variants never develop the disease.
What treatments are used for Crohn's disease?
Doctors may use corticosteroids for short-term flare control, immunomodulators such as azathioprine or methotrexate, and biologic or small molecule drugs that target specific parts of the immune response. Some people need surgery to remove damaged sections of bowel or to treat complications such as strictures and fistulas.
Can diet cure Crohn's disease?
No diet has been shown to cure Crohn's disease. Some people find that limiting certain foods during flares eases symptoms, and exclusive enteral nutrition is an established therapy for children, but any eating plan should be worked out with a doctor or registered dietitian to avoid malnutrition.
Where can people with inflammatory bowel disease find support?
Patient organizations such as the Crohn's and Colitis Foundation in the United States, national IBD associations in other countries, and online communities for young adults offer education, peer support, and help with insurance and financial assistance programs.
References
Mastrella, S. J., Powell, D. M., Bonaccio, S., and O'Doherty, K. C. (2026). Not an ideal worker, not a disabled worker: The experience of disclosing invisible disabilities at work. Journal of Business and Psychology.
National Institute of Diabetes and Digestive and Kidney Diseases. (n.d.). Definition and facts for Crohn's disease. National Institutes of Health.
Ng, S. C., Shi, H. Y., Hamidi, N., et al. (2017). Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: A systematic review of population-based studies. The Lancet, 390(10114), 2769-2778.
Insights, Analysis, and Developments
Editorial Note: What stands out in this account is how much of a chronic illness happens outside the doctor's office. Crohn's disease is usually discussed in terms of symptoms and drug therapy, yet the author's experience points to a different set of deciding factors: whether a family is willing to pay for care, whether a scholarship covers health insurance, whether a degree leads to a job before a residence permit runs out, and whether coworkers accept limitations they cannot see. Her friend's idea of a Monument of Solidarity, which would honor people whose potential was cut short by illness rather than only those who beat the odds, offers a useful way for schools, employers, and health systems to rethink how they measure success. For readers living with inflammatory bowel disease or another hidden condition, and for the people who teach, hire, or care for them, the takeaway is practical as well as moral - flexible policies, reliable insurance coverage, and a willingness to believe what people report about their own bodies can decide whether someone simply gets by or has a real chance to contribute.*
* Editorial additions by Ian C. Langtree.