How To Support Someone With IBD

Supportive family and friends are essential for those of us living with inflammatory bowel disease (IBD). It’s not uncommon to feel isolated after diagnosis. You’re overwhelmed by all of the information about your condition. Things like treatment options and dietary guidance don’t yet make sense. You don’t know where to turn, and you’re often embarrassed by the symptoms, so it’s not a topic regularly addressed with the people around you.

Putting in the time and effort

So many people in the community feel like they’ve lost friends because of their IBD. Personally, I’m not sold on the fact they were ever real friends at all if they’ve disappeared once a chronic condition enters the picture. However, if you’re the friend or family member reading this, you’re already being supportive. If you are putting time and effort into figuring out how to support your loved one with IBD, I salute you.

Many years ago, a friend mentioned they had been researching IBD to get a better understanding of it. It felt like the nicest thing someone had done for me in a long time. I mattered enough to someone, for them to go to that effort.

I mentioned that people with IBD may be embarrassed to talk about their condition and symptoms earlier. For that reason, my first recommendation is to ask how they’re doing.

How to support someone with IBD

Never stop asking how they are

Ask how they’re doing and actively listen. If they don’t seem very forthcoming, be understanding about that. It may be that they’re too embarrassed, or that they’re simply tired, or that they just don’t want to talk about their health right now.

Many of us have experienced feeling like people only ask out of courtesy, and don’t really want to know. There’s nothing worse than baring your emotions, only to see a glazed expression on someone’s face. All you can do is keep asking. Make sure they know their symptoms aren’t anything to be embarrassed about and nothing is off limits to talk about.

For a number of years following my diagnosis, I didn’t talk about it to people. It wasn’t a topic anyone really asked me about, and it certainly wasn’t one I wanted to bring up! I hadn’t processed how I felt about a lot of it, so I wouldn’t have known where to start. Maybe I would have if people had given me the opportunity to openly talk about it. If think if I had been allowed that safe space, my embarrassment would have been majorly reduced and I’d have felt less isolated.

You can learn plenty about symptoms and treatment options online. It’s also much more widely recognised that people with IBD may struggle with anxiety and depression than it used to be. But IBD varies from person to person. Let them know you’re interested and want to know how they are being affected by their IBD.

Don’t stop inviting them places

This one can be a bit of a double-edged sword, so it has to be approached tactfully. In my experience, and I know others in the community have experienced similar, if you say no enough, people just stop asking. This results in not only feeling left out, but unwanted.

It can be really rough when you’re unwell and keep having to say no to things. It gets old quickly, so that in itself can make someone feel rubbish, or even guilty. It’s important to let them know that you understand they might not be up for it, and that that’s perfectly fine. A more casual, open invite might help, presenting the invite in a completely non-committal way. Something like:

“Me and [whoever else] are going [wherever] on [whenever]. It would be nice to see you if you’re able to make it. No pressure, you can let me know nearer the time”.

Of course, if you’ve had a conversation and you know they’re not up for certain things anymore, or for the time being, don’t invite them along. It will just come across like you didn’t listen or don’t take their anxieties seriously.

Adapt what you plan to do together

If you know your loved one with IBD doesn’t like being anywhere they don’t know the exact location of a nearby toilet, take that into consideration. Maybe you invite them to the cinema and tell them you’ll book an aisle seat so they can get out easily. Or invite them for a picnic where you know there are toilets.

If you know they’re not tolerating a lot of foods well at the moment, you obviously don’t want to ask them to go out for a meal with you. However, you could offer to cook for them and make the effort to understand their current requirements.

There’s always the option of spending some time at their home, watching a movie or simply sitting in the garden for a chat and a drink.

Flares can come and go, so don’t take something someone said as gospel forever. Keep asking how they’re doing. When in remission, they might be much more confident in going out and about and doing things again.

Communication and understanding

I think communication is the real key to supporting someone with IBD. If you’re openly communicating and allowing them to do the same, there will be a foundational understanding there. If there’s a foundational understanding, everything else is secondary.

Activities, conversations, and life in general will flow naturally through flares and remission, treatment and surgeries. Communication and understanding are how relationships continue to grow and flourish through hardships and adversity.