World IBD Day: Raising Awareness, Sharing Strength

A Global Moment, A Personal Connection

May 19 is World IBD Day, a day that shines a light on what it’s like to live with Inflammatory Bowel Disease. Across the world, people with Ulcerative Colitis and Crohn’s Disease come together to raise awareness and share their strength.

For me, this day is always a little tender. It brings back memories of my diagnosis, of the confusion, the overwhelm, the frantic late-night Googling, trying to make sense of symptoms that no one else seemed to understand. It reminds me how far I’ve come and just how many others are walking this path right now, often silently.

The thing about IBD is that it’s invisible until it isn’t. It can look like nothing on the outside while turning everything upside down on the inside. And yet, every single day, people are managing flare-ups, navigating treatment, juggling work and relationships, all while quietly carrying the weight of a disease that doesn’t always get the recognition it deserves.

That’s why this blog exists. To raise compassion, confidence, and connection. If you’re newly diagnosed, supporting a loved one, or simply trying to understand more, I hope what you read here helps you.

This World IBD Day, we should focus on what helps: education, support, and connection.

What Is IBD, and Why Does Awareness Matter?

If you’re living with Ulcerative Colitis or Crohn’s Disease, you’re already fluent in the hidden language of IBD. You know the difference between a twinge and a flare. You’ve probably mapped out the bathrooms on your daily route. And you understand, deeply, that managing this condition takes more than just remembering your meds.

But for those who don’t live with it, IBD can be hard to grasp. So let’s start here.

Inflammatory Bowel Disease (IBD) is a term that covers two main conditions: Ulcerative Colitis (UC) and Crohn’s Disease. Both are chronic illnesses that cause inflammation in the digestive tract. While they share many symptoms like abdominal pain, diarrhoea, urgency, fatigue, and weight loss, they affect the gut in slightly different ways.

• Ulcerative Colitis impacts the large intestine (colon) and rectum, causing continuous areas of inflammation.

• Crohn’s Disease can affect any part of the digestive tract, from mouth to anus, and often occurs in patches.

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These conditions are a lot more serious than typical “stomach problems.” They’re autoimmune conditions with systemic effects, and they often bring mental health challenges along for the ride. And while more people are starting to talk about gut health, there’s still a long way to go when it comes to understanding what it actually means to live with IBD day in and day out.

That’s why awareness is so important.

Without it, people delay seeking help. Symptoms get dismissed. Diagnosis is postponed. And far too many are left feeling isolated or ashamed. Greater awareness means earlier diagnoses, more empathy in our relationships, better care in the workplace, and increased funding for research.

It also means shifting the narrative. Moving away from invisibility, embarrassment, and stigma and toward clarity, courage, and connection.

If you’re looking for a more clinical breakdown of IBD, WebMD has a useful breakdown. Here, we’ll be focusing on something just as important: the lived experience. Knowledge that’s not always available in a medical journal. 

Living With IBD: The Everyday Strength We Don’t Talk About Enough

There’s a strength that comes with living with Inflammatory Bowel Disease, the kind that rarely makes it into awareness campaigns or doctor’s notes. It’s the strength of showing up for your life when your body makes it feel impossible. The strength of navigating daily tasks with a smile, even when your gut has other plans.

People often think of IBD in terms of flare-ups, and yes, those are intense. But there’s another side to it: the slow, steady grind of managing an unpredictable illness over the long haul. That’s where the resilience lies.

Symptoms You Can’t Always See 

Let’s talk about the stuff that’s harder to explain. The deep, dragging fatigue that feels like you’re wading through mud. The urgency that turns every outing into a mental logistics exercise. The fear of eating out. The ache of cancelled plans, or the silent guilt of being “the one who always flakes.”

Ulcerative Colitis and Crohn’s are both inflammatory conditions, but they don’t just stay in the gut. They can affect joints, skin, eyes, and your overall energy. And because these symptoms are invisible to the outside world, people often feel like they have to pretend they’re fine when they’re far from it.

You don’t have to earn your rest by looking sick. You don’t need visible proof to justify how hard you’re working just to get through the day. You’re allowed to care for yourself without apology.

Mental Health, Grief and Learning to Cope 

Living with IBD is physically demanding, but it’s also emotionally complex. It can bring up grief (for the version of life you imagined before your diagnosis), anxiety (about when the next flare will hit), and sometimes even shame (because of how misunderstood digestive diseases still are).

In the early days of my diagnosis, I remember feeling like my body had betrayed me. I didn’t trust it anymore. Every meal became a question mark. Every pain was a potential red flag. And worst of all, it felt like no one around me understood.

What helped me most wasn’t just medical advice (although that is very important!), it was finding

ways to process the emotional layers. Therapy helped. Journaling helped. And so did building a gentle toolkit of coping mechanisms: meditation, stretching, voice notes to friends, and permission to do less.

If your mental health has taken a hit, you’re not alone. It’s a totally human response to a difficult, often invisible condition. And it’s okay to ask for help.

Raising Awareness: 5 Ways to Get Involved This World IBD Day

You don’t need a big platform or a complicated plan to make a difference. If you’d like to do something for World IBD Day, here are five simple ways to get involved:

1. Wear Purple

Purple is the colour used to raise awareness for Ulcerative Colitis and Crohn’s Disease. Wearing it on May 19 is an easy way to show support, especially when paired with a conversation, a post, or a question like “Have you heard of IBD before?” It might seem small, but visibility counts. You never know who might feel a little less alone just by seeing it.

2. Share Something Real

You don’t need to write a long post or have it all figured out. You can share a sentence, a photo, a Reel, or even just a reflection in your stories. It doesn’t have to be polished, just honest. If you’re not up for sharing publicly, consider writing a note to yourself. Sometimes, raising awareness starts with understanding your own experience more clearly.

3. Ask Someone How They're Really Doing

If someone close to you is living with IBD, World IBD Day can be a good prompt to check in. Not the casual “How are you?” but something more specific, like “How’s your body feeling lately?” or “What’s been hard this month?” Making space for someone to talk about what they’re carrying can be more helpful than you think. 

4. Notice What’s Lit Up in Purple

Landmarks across the world will be lit up in purple on May 19, everything from public buildings to bridges to monuments. It’s a visual reminder that IBD affects people everywhere. If you happen to spot something purple in your area, snap a photo, share it, and tag it #WorldIBDDay. It’s a small gesture that helps make IBD more visible.

5. Learn Something You Didn’t Know Yesterday

Even if you’ve been living with IBD for years, there’s always more to understand about your condition, about the research, or about how others are coping.

You could start with:

• Mayo Clinic’s IBD Guide

• The Crohn’s & Colitis Foundation

• Cleveland Clinic

• WellNow

The more we know, the better we’re equipped to advocate, explain, support, or just feel more at home in our bodies.

How Community Creates Resilience

It helps to know you’re not the only one.

When I was first diagnosed with Ulcerative Colitis, I didn’t know anyone else who had it. I’d never heard of IBD, let alone understood what it meant to live with it long-term. Most of what I learned in those early weeks came from forums, blog posts, and people on the internet who were generous enough to share their stories.

That’s when I started to realise: community doesn’t have to be loud or formal. It can be a message from someone who gets it. A social media post that puts words to something you’ve been feeling. A friend who sends you a hot water bottle when you're flaring, just because they remember what you told them last time.

IBD can be lonely, but it doesn’t have to stay that way.

Connecting with others, online or in person, can improve how you relate to your condition because it reminds you that your experience is real and shared. That there’s a language for what you’re going through. That someone else has been where you are and figured out how to keep going.

The Bigger Picture: Advocacy, Access, and Hope

Living with Inflammatory Bowel Disease can be shaped by policies, systems, and support structures that often don’t keep up with what people need.

People with IBD face challenges that go beyond the gut. Missed diagnoses, long waiting lists, expensive medications, workplace misunderstandings, and a general sense of being invisible in systems that weren’t designed with chronic illness in mind.

And part of the reason those systems haven’t shifted is because not enough people know what IBD really is.

Here’s why that matters.

Most people have heard of IBS. But mention IBD, and you’ll get blank stares or assumptions that it’s just a more dramatic version of a sensitive stomach. It’s not. These are lifelong autoimmune conditions that can affect energy, mental health, relationships, career paths, and how safely you can move through the world.

And yet, so many people living with IBD feel like they have to hide it.

That’s why awareness makes a difference. When people understand the condition, it changes how they respond. Teachers offer support instead of penalties. Employers create accommodations instead of assumptions. Friends check in, not out.

Awareness also helps people get diagnosed earlier. It helps them feel less shame when they need to urgently leave a meeting or cancel plans last-minute. It helps reduce that awful period of second-guessing your body and wondering if it’s all in your head.

The good news is we are making progress. There are new treatments emerging. More people are speaking up. Conversations that used to be buried in online forums are now showing up on social media, in doctors’ offices, and around dinner tables.

Hashtags like #IBDAwareness and #WorldIBDDay are helping to bring those lived experiences into the light.

If you want to dig a little deeper, the Crohn’s & Colitis Foundation has practical resources for patients, loved ones, and advocates. Sometimes, Advocacy just means reading up. Asking a better question. Wearing purple on May 19. Or simply remembering that someone around you might be dealing with a lot more than they let on.

FAQs

What’s the difference between IBD and IBS?

Inflammatory Bowel Disease (IBD) refers to chronic inflammation in the digestive tract, mainly Ulcerative Colitis and Crohn’s Disease. It can lead to serious complications and often requires long-term medical treatment. Irritable Bowel Syndrome (IBS), while uncomfortable, does not cause inflammation or permanent damage to the bowel. The two are often confused, but they’re very different conditions.

Can I live a full life with Ulcerative Colitis?

Yes, but it may take time to find what works for you. That might include medication, dietary adjustments, mental health support, and rest. Flares can be disruptive, but many people find ways to manage their condition and live well over the long term. For more on living with UC, check out my other blogs like this one about travelling with Ulcerative Colitis.

What are some early signs of IBD?

Common early symptoms include persistent diarrhoea, abdominal pain, blood in the stool, fatigue, and weight loss. If these symptoms last more than a couple of weeks, it’s worth speaking to a healthcare provider. Early diagnosis can make a big difference.

Is there a cure for Ulcerative Colitis or Crohn’s?

There’s currently no cure, but there are treatments that can reduce inflammation, manage symptoms, and help people reach remission. Research into new therapies is ongoing, and progress is being made.

How can I support someone with IBD?

Start by listening. Learn what their condition involves, check in regularly, and be patient with last-minute plan changes. Offering practical help, like meals they can eat, driving them to appointments, or simply being available, can make a real difference. 

You Are Not Alone

IBD can feel isolating. But you’re not doing this alone.

There’s a community of people learning how to live with this, people who understand the unpredictability, the exhaustion, the constant calculations around food, bathrooms, energy, and plans. People who’ve had to cancel at the last minute, sit through meetings in pain, or explain symptoms that others can’t see. 

And even if you haven’t found your people yet, they exist. 

Reading this is a step. Talking about it is a step. Asking for what you need is a step. And every one of those matters.