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Explaining IBD to Family or Friends

Last updated: December 2022

I'm sure most of us have felt the frustration (and annoyance) of family and friends just not getting it when it comes to inflammatory bowel disease (IBD).

I do realise that it can be difficult to understand. After all, it can also be difficult to explain!

People don't always understand

I've had family and friends assume I'm well because I've gone along to an event, celebration, or family occasion. The truth is, I have simply learned to function with a certain amount of energy and symptoms.

I've had family and friends make lifestyle recommendations and tag me in totally irrelevant social media posts that lack any scientific evidence.

I've hidden how I feel on occasion. Sometimes, that's because I don't want to talk about it, and I feel like it's easier for me if I just carry on with a fake smile. I don't want to give it any "airtime" because it somehow makes me feel worse. Other times, it's because I don't think others want to hear about it. I imagine that they're sick of hearing about it.

I even had a family member put his fingers in his ears and request we let him know when we've finished talking about poo... I was offended at the time.

Knowing who to share more with

My journey has taught me that not everyone wants to be educated about the bowel habit part of IBD. I have also concluded that that’s OK. Some people don't like the sight of blood or the smell of celery. (It's true!) If someone is bothered by something, who am I to tell them that they're wrong? So, if talking about poo makes someone uncomfortable, that's OK too.

However, for those willing to listen, I am more than happy to be the educator. There's a general framework I usually follow when I'm telling someone about Crohn's and colitis. This is adapted based on how much information I think they actually want and how much they will be able to understand.

How do you explain IBD?

First of all, I like to make it clear that IBD is not the same for everyone with it. There is currently no cure, and periods of flare and remission can be very unpredictable. When I'm well, I've no idea when I might flare again.

It is not in any way related to the similar-sounding IBS. It's a very complex disease encompassing both Crohn's disease and ulcerative colitis. It's called an immune-mediated disease because it's our immune system that is "confused" and is attacking healthy tissue.

There are many subtypes of these conditions, depending on where in the gastrointestinal tract the disease is currently active. Someone can move into different subtypes, disease can progress at different rates in different people, and the symptoms we experience differ from person to person, often depending on the subtype.

Advice isn't always welcome

The cause of IBD is not fully understood, but there are many factors thought to be implicated, such as genetics and our environment. I like to hammer home that we aren't to "blame" and that whilst some lifestyle changes may be beneficial for some people, there is no recommended diet, exercise, or meditation programme that's going to cure us of our IBD. And recommendations for such things are often really frustrating.

Our symptoms go far beyond the bathroom

I like to list the common symptoms and explain which ones I generally live with. Also restating that this can change over time and vary from person to person. I usually mention abdominal pain, weight changes, change in bowel habits, and chronic fatigue. I explain that having IBD can sometimes dictate what someone can and can't eat and drink, and sometimes what they're well enough to do. This is changeable, and also varies from person to person.

Because I don't want to completely overwhelm people with information, I just like them to know that IBD is certainly not just a bathroom disease, like it's often assumed. There are many extraintestinal manifestations that impact a lot more of our bodies, from our skin and eyes to our joints and mental health. Plus, there are many "related" conditions as well.

Treatment for Crohn's and colitis is complicated

People often assume that because you started medication, you'll be better next week. I can forgive them for this assumption. After all, that's how it usually works, right? Again, I explain that the complex nature of the disease means that different treatments alleviate symptoms for some people, and not for others. This can mean that flares last a very long time, whilst we wait to find the right one.

We're often subjected to many diagnostic tests to check the progress of our disease during this time. Sometimes, side effects caused by our treatments might even require other medications. These medications usually work to prevent our immune system from attacking healthy tissue, but this often means that our immune system can't fight off common bugs. I want my friends and family to know that when I say I'm not going to see them because they're a little under the weather, it's not personal.

Sometimes we need surgery for IBD

If the treatments don't get us into remission, surgery might be the only alternative. Surgery may also be required for the complications of IBD, such as strictures and fistulas. Having had seven bowel surgeries myself, I can share a lot of my experiences.

However, I would usually just talk briefly about surgeries such as bowel resections and the possibility of needing an ostomy. I don't want to cause alarm or worry unnecessarily, and the subject of surgery feels like a whole different topic.

Grateful to be heard

Living with IBD can feel very lonely, so I always tell those that have listened that I appreciate being heard and that I am always happy to answer any questions or repeat anything I've told them. I won't feel like they didn't listen the first time, because I understand there is a lot to take in and process. I'd always rather someone ask than make assumptions.

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