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World IBD Day: In 2019, is awareness of IBD actually any better?

Awareness is a word we hear a lot about when it comes to living with IBD. And with each World IBD Day comes another chance to raise awareness of  Inflammatory Bowel Disease. However, whilst the number of column inches and tweets might go up every year, I wonder: is awareness actually getting any better?

The terminology is still wrong

Yes, chances are people are now more likely to know what Crohn’s Disease or Ulcerative Colitis actually means. In fact, we’ve become more comfortable with talking about all things poo and destigmatizing some of the issues around that, which can only make our lives easier. However, how many times do you see articles where the facts are reported inaccurately still? Because I do. In fact, I only watched a BBC piece last week which did an amazing job of making IBD prime time-until the caption underneath read ‘Irritable Bowel Disease.’

I’ve lost count of how many times I see the phrase ‘Chron’s disease’ or IBS and IBD being used interchangeably. Perhaps the ex-teacher in me is being pedantic, but if we can’t get the basics correct, how can we expect true awareness?

We still only focus on certain aspects of IBD

In other words, poo basically. Lots of poo! The case studies in the media tend to be the most dramatic of cases and focus on just how many times people go to the toilet or share dramatic plights of extreme weight loss, hospital dashes, and bowel perforations. Whilst this is important to show just how severe our illness can be (and ensures we’re rightly taken seriously), it can mean that people are only aware of certain aspects of our disease—and could even put people off seeking diagnosis if their symptoms don’t match.

IBD comes in all shapes and sizes

I’m aware I might be in a minority, but one of the reasons I was misdiagnosed for so long is that I didn’t have so many ‘extreme symptoms’ but lots and lots of smaller ones. I didn’t have extreme blood loss and went to the toilet only a few times a day. But I did have anaemia, mouth ulcers, skin tags in my perianal area (and later abscesses) and fatigue along with discomfort, pain and lose motions all the time. I hadn’t heard much about IBD at the time but I know that it didn’t seem to match up to the dramatic stories I did hear. Yet sometimes our colons can tell a completely different story to our faces! What’s more, this type of unbalanced coverage could be scaremongering for those newly diagnosed. Of course, they are real stories and I don’t wish to diminish them but when you only hear the ‘worst’ of every disease, it could be overwhelming?

What we still don’t talk about

As I mentioned, extreme stories dominate the narrative and there has also been more of a focus on ostomies. This is great—especially when they’re shown as ultimately a positive thing that can give people with IBD their lives back. However, very rarely do we hear about rarer complications of IBD. Things like fistulas and living with a seton. The fact that so many of us with IBD also struggle with anxiety and mental health issues. The many extra-intestinal manifestations and how for some IBD can impact everywhere from their eyes to their vaginas. In fact, many of us with IBD aren’t often aware of these issues either; since our doctors rarely go beyond the classic markers (how are your bowel movements? any pain?) when we discuss our symptoms with them. I have previously written an article about vaginal Crohn’s on my own blog and the majority of those who read it were not aware it existed (I’ll be honest, neither was I until a reader got in touch).

How can awareness for IBD get better?

We will always need more awareness of IBD and one day certainly isn’t enough. But, arguably we need a more diverse awareness of IBD too. We need to talk about how the illness can impact our mental health just as often as we talk about or physical health. We need to talk more about what life is actually like with the condition—about the good days and the bad. And we need to start asking more questions about the illness in general and not shy away from the less discussed (and sometimes more awkward) topics too. Yes life with IBD can sometimes centre around our bowel movements, but it is also so much more than that. And until we can be open about every aspect of life with Inflammatory Bowel Disease then, in my opinion, awareness can only really do so much.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie Marie Palumbo moderator
    5 months ago

    This is a terrific article! Thank you so much for writing it, and shining the light on many issues and lack of consistencies we see with IBD.

    My biggest issue is that people think it is just a bathroom or “poo” issue, where in fact it is not. This needs to be addressed by more people in the community so that others know exactly what we face daily.

    –Julie (Team Member)

  • thedancingcrohnie moderator
    5 months ago

    Beautifully written. Great points!

    Always dancing,
    Elizabeth (team member)

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