February 02, 2022
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The best way you can support someone with IBD is to just be there for them, without feeling the need to fix their situation.
When I was diagnosed with ulcerative colitis 13 years ago, I had no idea how to explain it to anyone. Ulcerative colitis is a form of inflammatory bowel disease (IBD). I was bombarded with tons of questions about this new diagnosis, and I quickly realized that certain comments were comforting and others were… not.
As the years passed and the flares continued, I found myself constantly having to answer the same unhelpful questions from people. I’ve even joked about creating a guide to IBD and sharing it with everyone I know.
There are many curious people who mean well and truly want to support those of us living with IBD, and they may not know the right things to say. Most people with IBD want your support as much as you want to give it.
So, without further ado, here’s what not to say to those of us with IBD — and what to say instead.
Irritable bowel syndrome (IBS) and general stomach issues are not the same as the inflammatory bowel diseases, like Crohn’s disease and ulcerative colitis.
Briefly stated, IBD is an inflammatory condition, while IBS is a non-inflammatory functional disorder.
Some symptoms can be similar, like bloating, gas, cramping, and diarrhea. However, there are many differences. For example, those living with IBD may face symptoms that can affect any part of the gastrointestinal tract.
“I’m sorry you’re dealing with this. Thank you for sharing your experience with me.”
In this response, you’re sharing your empathy instead of comparing it to an unrelated health condition.
Most of the time, this comment is probably intended to be a compliment. I have received this from several very kind people, so I know this to be true.
However, it minimizes the person’s experience and assumes that the person is only sick if they physically appear sick.
“How are you? You always look great, and I can’t tell how you are really feeling.”
This response avoids any assumptions about their health based on their appearance, and it provides space for them to share openly about how they’re actually feeling.
Hearing this comment always makes me a little sad, even though I respond with a smile and a “thank you.”
IBD is a chronic illness, which means that it doesn’t just go away. People with IBD can live with ongoing symptoms at varying degrees.
Even though this comment comes from a kind place, it can be a harsh reminder that they may never “feel better” in the sense that you’re referring to.
“I know this is a hard time for you. Please let me know if there’s anything I can do to support you.”
This response acknowledges what they’re facing and provides a genuine offer of support.
Yes, I am still sick. Having a chronic illness means just that — it’s persistent and lifelong. I will have periods when I feel great, and I always love celebrating those seasons of life, but I will still have a chronic condition.
Being met with shock when I tell people I’m still sick is neither encouraging nor helpful. It can make the chronically ill person feel obligated to explain why they’re still sick.
As someone who lives with a debilitating disease, I know how long I’ve been sick and don’t need to be reminded.
“I’m so sorry this flare is lasting so long. I know how hard you’re fighting for your health.”
This acknowledges how hard the person is fighting and that it’s a long battle — without the shock factor.
Your loved one with IBD has probably tried it all. If they’ve had IBD for more than a year, they have likely researched like it’s their full-time job, spoken at length with their doctor, and experimented with all kinds of supplements.
I know this is meant to be helpful, and it’s easy to have the urge to fix a problem. Unfortunately, IBD is complex and can’t be fixed with meditation, yoga, or the latest supplement on the market.
When someone shares their story of IBD with you, they’re looking for support and a listening ear. There’s no need to try to fix the problem. Just be a good listener, and you’ll be a fantastic support for them.
“It sounds like you’re really fighting this flare with everything you’ve got. Keep fighting!”
This response shows that you recognize how much effort it takes to fight IBD, without trying to fix it for them.
Spoiler alert: No one knows the exact cause of IBD. The medical community believes it’s a combination of genetics, environment, and lifestyle. However, it’s nearly impossible to pinpoint an exact reason or cause that incites IBD in the body.
So, while this comment is likely stemming from genuine curiosity, it puts too much pressure on the person with IBD to come up with an explanation. For someone with IBD, pinpointing a cause can be a tireless and fruitless task.
“I’m so sorry this is happening to you. How long have you been experiencing this?”
This comment shares genuine concern and a question that’s not painful or confusing for the person to answer.
The best way you can support and encourage someone with IBD is to just be there for them, without feeling the need to fix their situation or understand why they’re sick. It’s important to be mindful of the questions you ask and the comments you make about IBD, even if your intentions are good.
Be a listening ear, a shoulder to cry on, and a witness to their journey with IBD. They will be incredibly thankful for your presence in their life.
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