5 Things Not to Say to Someone With IBD
I'm not sure which is more infuriating, having your lab results come back completely normal when you feel like absolute death or having someone tell you, "Maybe you should give up dairy to cure your Crohn's disease?"
Unsolicited advice can truly rub an IBD patient the wrong way, and while I try to think that it always comes from a place of love or concern, the truth is, one wrong comment or suggestion can ruin our day and send us over the ledge.
Sometimes, we just want a listening ear
If you are reading this as a caregiver or loved one of someone with IBD, listen up. It is not that we aren't grateful for your support and ways that you try to help. We understand that you feel like your hands are tied and you cannot help us get better, so you think that some anecdote about your hairdresser's sister who went on a 30-day cleanse and cured her IBS will somehow help. I can assure you that it will not make us feel any better, and may actually make us feel worse.
Below are 5 things not to say to someone with IBD, and what to say instead so that you are being the best support person you can be.
What not to say to someone with Crohn's or ulcerative colitis
"But you don't look sick!"
We appreciate that you are complimenting us on how physically well we look on the outside despite the battle that our body is fighting on the inside. However this comment often comes across as dismissive. I remember when I was admitted to the hospital in 2014 for a life-threatening abscess and the nurse at check-in said to me, "You can't be the patient looking like that!" to which I replied that I was very much the patient and extremely sick.
It is almost engrained in us to put on a happy face and hold ourselves together so that we can at least feel like normal human beings while experiencing a flare. So, complimenting us on how we look is nice, but please acknowledge that we are battling a fierce fight internally. Or, simply stating we look well and then asking us how we feel is also appreciated so that we can tell you what it really feels like living inside our bodies.
Say this instead: "I understand you aren't feeling well even though we cannot see it from the outside. How are you doing?"
"Have you tried X to cure your disease?"
First of all, there is no cure for our disease. Second, there is a good chance that we have tried whatever it is that you are asking. And if we didn't, it is not a sure thing that your suggestion will help.
For example, I went gluten-free in 2013 for my Crohn's and it dramatically changed my quality of life for the better. I wasn't immediately in remission. (That came a couple of years later after including a new biologic.) But my symptoms improved and I wasn't looking for a bathroom immediately after every meal. Did it help me? Of course. Would I tell someone else that they should go gluten-free to help their symptoms? No.
In my health coaching practice, I never suggest that what I have done will help others, but it is always an option when they are out of ideas. I also preface it with, "This has helped me and I know that no 2 patients the same, but it might be worth a try to see if it helps." Making assumptions that what worked for 1 patient is the go-to answer for all patients rubs us the wrong way, especially when we already tried a list of solutions that had no effect.
Say this instead: "It seems like people are always talking about things they tried that make them feel better. Is there anything you found that works for you?"
"Maybe if you stopped X, you wouldn't be sick."
If I had a dollar for every time someone said, "Maybe if you stopped drinking alcohol, you wouldn't be sick," or, "Maybe if you stopped stressing out, you wouldn't be sick," and the like, I would be a very wealthy woman. The dismissive nature of this statement coupled with someone thinking that just 1 thing is responsible for all of our problems is truly infuriating.
Yes, we all know that foods such as sugar and alcohol and caffeine don't make us feel better, but it is highly likely that they are not solely responsible for our chronic pain and suffering. And, don't be so quick to judge us. It's hard to make dramatic changes to your diet and lifestyle, as I did in 2013 in giving up gluten, which was no easy feat. And when we are sick, it is even more difficult to start making adjustments when we already feel like our world is turned upside down. Please, reserve judgement.
Say this instead: "Is there anything you can do to help your symptoms?"
"I have IBS so I know exactly what you're going through!"
The common misconception that IBS and IBD are the same is not new. However, people continue to think that their frequent bathroom trips after they eat dairy is the same as Crohn's disease.
In short, it is not. I understand that maybe those with IBS like to think they are being empathetic because they know the feeling of driving on a highway when the sudden urge to use the bathroom hits and they are white-knuckling their steering wheel trying to get to the next exit ASAP. However, it is most certainly not the same as Crohn's or ulcerative colitis.
The fatigue, joint pain, rectal bleeding, fissures, fistula, fevers, and skin rashes that accompany IBD are most likely not experienced by those with IBS. And, if you know that dairy is a trigger for you while living with IBS, chances are that by going lactose-free, you will see your symptoms subside with no further action needed. IBD patients, unfortunately, cannot say the same for their issues.
Say this instead. "I have IBS. How is IBD different?"
"Are you sure it's not just stress?"
Many of us with IBD have been told that it could be "all in your head" prior to receiving a proper diagnosis. Then, after we are diagnosed with Crohn's or ulcerative colitis, we are told that stressing out causes our pain. It is a never-ending loop of people thinking that our minds are responsible for how we feel.
Let me point out that there is a gut-brain connection that explains why the more nervous/anxious we get, the more our stomach hurts, but this is not the same thing as assuming that the everyday stresses that we experience cause our symptoms. Similar to sugar, caffeine, and alcohol, more stress on the body isn't a good thing (and we should try to minimize it as much as possible), but stress alone does not bring upon Crohn's or UC on its own.
Say this instead: "I understand stress may have an impact on IBD, how do you think it affects you?"
This or That
Has anyone ever said any of these to you?
What can someone say that would be helpful?
Asking someone,"Can I help?" or "How can I help?" is really nice, but we are most likely going to say that we're fine.
Try this instead: Ask a specific question about how you can help like, "I am going to the pharmacy, what can I pick up for you?" or "I am making soup today, would it be ok if I dropped it off for you?" This makes it harder for us to say "no" and makes us feel less of an inconvenience.
On behalf of my fellow IBD patients, I want to make it clear that we truly appreciate all of the support and love you have given us throughout our journey with Crohn's and UC, and we hope that these suggestions help guide you when trying to make a positive impact on our lives.
How open are you about being diagnosed with IBD?