Why We Can No Longer Keep Quiet About IBD

World Inflammatory Bowel Disease (IBD) Day is here!

It’s a day where we aim to raise awareness of Crohn’s disease and ulcerative colitis — traditionally, conditions that often go unspoken due to their “invisibility” and complexity.

It’s very easy to fall into the trap of keeping quiet about these illnesses.

We may find that people often don’t understand just what is involved in living with a chronic illness, so we just don’t open the dialogue. After all, it’s easier that way isn’t it?

Nope.

Not talking about IBD makes it shameful. It implies that as patients we have something to hide, something to be embarrassed about. It allows ignorance to run rampant, like a dinner party held by Donald Trump and the UK Independence Party. It causes insecurity, anxiety and confusion. When we remain mute on the subject of our illness, we allow others the space to come to their own conclusions. Conclusions which are wrong 99.9 percent of the time.

We have to talk to ensure we are consistently reaffirming the point that we have
absolutely nothing to be ashamed of. We are living with illnesses that massively affect our lives and we should remind ourselves often that leading “normal” lives around an abnormal illness takes huge courage, humility and strength.

So what to do to spread the word? 

And is all awareness “good” awareness? Well, it’s certainly vital we teach those outside of our illness what it entails, and how it affects our lives, but how?

I feel education is of the utmost importance. How can you expect strangers to
comprehend your illness when you can’t really explain it yourself? I have Crohn’s disease and I’m still learning about it. I experience something new every day. It’s never-ending.

We need to help one another educate ourselves and others.

If you are knowledgeable about IBD, then share! Don’t patronize other patients. When you do that, you only make them retreat further into their diseased shells. When I was first diagnosed there was so much information to take in it was utterly overwhelming. It was almost impossible to distinguish the accurate from the hyperbole. Everyone has their own horror story to share and none of them help ease a worried mind.

Use days like today (and every day) to share your knowledge and support those who maybe don’t have as much of it as you. Don’t just raise awareness; raise the bar. Give the gift of information. It’s the most useful gift you can give; it’s non-returnable, recyclable and never gets old. 

On IBD day in 2013, I spoke in public for the first time since reading a Philip Larkin poem aloud at age 14, at a conference held in Birmingham aimed at raising awareness of IBD. I was asked to speak at the event by John Bradley, an author and all-around lovely man. He has written on Crohn’s disease himself (“The Foul Bowel“) and at this event he encouraged me in my pie-in-the-sky dream of writing my own book on my experience of IBD.

I went ahead and did it, and an actual real-life publisher has picked it up!

My own book “Go Your Crohn Way – A Gutsy Guide in Living with Crohn’s Disease” came out May 5!

The day after IBD Day I’ll officially “launch” my book with my friends, family and favorite man in existence. If Jon Hamm is unavailable, it’d be nice if my boyfriend was there, too. My knees will knock once again as I try to talk in front of anyone more than my cats.

I truly hope you enjoy my writing; it contains my heart, soul and remaining guts.

I’m finally starting to feel proud of myself. Not only for writing my book, but I previously thought that every nasty procedure, every stay in hospital, every day when I’m in work when I want to be hibernating in bed, was just life. My life. That I don’t deserve praise for what I should be doing. I don’t want it, don’t get me wrong, but I want to start praising myself for these little victories. As should everyone with a chronic illness. Things such as getting out of bed, getting dressed and carrying out a day’s work aren’t akin to running a marathon for most people, but they are for us. Therefore, it’s really OK to give yourself a pat on the back when you cross your own finish line.

IBD is an incredibly debilitating condition which has no cure. It causes agonizing symptoms at its worst and is an endless inconvenience at best. It can be “controlled” but nothing more. It affects its sufferers in minor and major ways, and can floor patients at the drop of a diseased hat. But it’s taught me the resilience of my fellow Crohnies is both surprising and wonderfully unrelenting. It’s spurned me on when situations have been hairy and as rough as my legs during a Scottish winter. It’s given me faith in myself and my future — it’s not bleak and it’s not going to be all about Crohn’s. It’s going to be as bright as I want it to be, as bright as I allow it to be. Not as bright as my disease allows. 

On days like IBD Day, and every day, being aware of IBD isn’t just about learning what the gruesome side effects are. It’s also about reaching out a helping hand to another human being who might not necessarily look sick, but just might need it.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.