Living with bowel disease (whether you’ve got an ostomy or not), is different for everyone. If you follow me over on Instagram, you’ll know that I am passionate about making the ‘invisible’ visible and empowering others, helping them to see that they’re not alone. World IBD Day (19th May) is a great opportunity to get involved and do this together.
Whether you are living with IBD or know someone affected by IBD, see this post as a helpful guide. I’ll be de-bagging (pun intended) some of the common misconceptions and highlighting what it’s like living with IBD. My goal? Hopefully to help you learn more about IBD if you know someone impacted by it, and if you live with it, hopefully this post helps you feel more seen and understood. Let’s get into it.
Reasons why World IBD Day matters
For the millions of people living with IBD globally, this day means different things to different people. For many, it means a day of recognition and validation. Because IBD can sometimes be seen as an ‘invisible’ illness, many people struggle in silence. This day helps to:
- Break stigma: talking about our toilet habits might feel embarrassing to some, but unfortunately, that silence only adds to society’s misunderstandings.
- Advocate for the care we deserve: raising our voices collectively helps us fight for earlier diagnoses, better treatments and push closer to a cure.
- Build vital empathy: when people better understand the condition, they are more equipped to support those around them affected by IBD.
“But you don’t look sick!”
Yes, you’ve probably been on the receiving end of that phrase like me. We’re talking about misconceptions. IBD is a chronic, autoimmune condition in which the body’s immune system attacks a part of or the whole of the digestive system. It isn’t caused by “just eating the wrong thing” or “just stress.”
While the physical symptoms such as abdominal pain, fatigue, weight changes, changes to your bowel habits and urgency are difficult to deal with, the emotional toll can be just as heavy. Before my ileostomy, or on days where my ileostomy is super active and runny, the anxiety revolves around being near a toilet. If you feel like you can go out, it involves mapping where all the toilets are, to the point where you know every single one. It’s the guilt that comes with having to cancel plans and the mental exhaustion of trying to live your life whilst dealing with a lifelong condition.
My journey, my reality
I’ve navigated my fair share of lows with IBD, especially before my stoma surgery in 2011. Life then was a constant cycle of pain, stress, eating nothing, feeling good for nothing and toilet emergencies. Getting Stacey stoma was a huge turning point. It changed my life for the better and it saved my life.
However, I still deal with IBD symptoms, such as fatigue, iron-deficiency anaemia and things from surgery such as scar tissue. It’s a daily commitment to looking after my health as much as I can, both physically and mentally.
How can you help this #WorldIBDDay?
- Listen without judgement: if someone opens up to you about their IBD (or their general health), simply listening can make such a difference.
- Educate yourself: learn more about IBD. There are some great resources, both online and offline.
- Share your story: sharing your story helps others feel seen, and raises vital awareness.
By clearing up the misconceptions and sharing our realities, living with IBD, we can move towards a better world where less people feel they need to hide their condition.
Beyond the physical challenges, remember that community is everything! Finding others who can truly understand the physical and emotional impact of IBD is a feeling like no other. Being an ambassador for Respond has shown me that sharing our tips and our highs and lows is how we can truly be there for one another.
If you’re wondering how to get involved this #WorldIBDDay, start by sharing your story. Or if that feels too much, reshare others’ stories on social media to help raise vital awareness.
