Every person that lives with a chronic illness has been on the receiving end of advice related to managing their disease. People living with inflammatory bowel disease (IBD) are especially vulnerable to the influx opinions, perhaps because the disease is not well understood by the general public (let alone by the medial profession outside of IBD experts). Some people are quick to suggest anything from a change in diet to alternative and complementary therapies, especially when the disease appears to be affecting daily life. It can be a struggle to deflect these comments with grace, especially when the suggestions have been tried already and didn’t offer any relief.
When people who don’t live with IBD offer their “advice,” how can you cope with it?
Advice Might Come From A Good Place
It’s true that some people aren’t giving advice out of the goodness of their hearts, but this is going to be the minority of folks. Most people are offering their take on the situation because they are truly interested in helping. They may not have an appreciation for how complex IBD is and how many different things most patients try that fall outside of conventional medications in order to get the disease under control. It can help to remember that the advice probably isn’t meant to cause upset or to be patient blaming: it is meant to be useful. Taking a breath to consider that can be helpful when the advice gets to be too much to handle.
- “Thank you, I appreciate that you care about me enough to try to help.”
- “Actually, I tried that already and didn’t see any benefit, but thank you for thinking of me.”
When The Advice Might Be Valid
Most people who live with IBD become experts in the disease — and in their individual type of IBD — fairly quickly. Outside of an IBD specialist, there’s not likely to be much that a person who doesn’t live with the disease can offer in terms of solid advice. However, that doesn’t mean that every single piece of advice is bad or deserves to be disregarded. The signs and symptoms of IBD are insidious and sometimes the people around us can see something about ourselves clearer than we can. It’s possible, then, that an advice-giver can offer a grain of truth that’s worth considering. Perhaps there is something that could help ease a symptom or be effective for reducing stress. Is it worth considering a piece of unsolicited advice every so often? Maybe! Take into consideration the source, especially when it’s someone close to you who has your best interest at heart.
- “You’ve given me something to consider, and I’ll let you know if I need to know more.”
- “I’ll have to think about this some more, thanks for discussing it with me.”
Acknowledging Advice Without Taking It
In some cases it might be clear that the advice is well-meaning but still off-base. The advice-giver may not want to give up, however, which can be a challenging situation. This may present an opportunity to educate about IBD but in some situations it may not be appropriate or the advice-giver may not be receptive. This may all translate to having to listen patiently to advice that will certainly never be acted upon. In order to prevent further discussion, the best idea may be to acknowledge, thank, and gently but firmly discourage further conversation. Changing the topic of conversation is an art and can prove tricky at times but a tactic that often works is to turn the focus onto the advice-giver. Ask them about their health, their family, or something else that is important to them and keep building on it until the opportunity to leave the discussion presents itself.
- “Thank you, that’s really interesting. By the way, how are things are your new job?”
- “I think I know another patient who tried that, maybe I’ll follow up with them. How is your family these days?”
When You Need to Put a Stop to It
Being overwhelmed by an advice-giver or subjected to repeated questions about physicians or treatments may require a more direct approach. In these cases, it may be necessary to tell the person that their advice won’t be acted upon because it’s not the right decision. It’s usually not necessary to be rude or to burn a bridge with a friend or relative, but it may be necessary to make it clear that personal health decisions are no longer a welcome topic of conversation.
- “I appreciate that you’re trying to help but I’m not interested in discussing my health right now.”
- “I make my health decisions carefully and I’m going to ask that you respect that my team and I are on the right path.”
Seizing Opportunity For Education
Misperceptions about Crohn’s disease and ulcerative colitis are long-lived and pervasive in our society. A discussion about IBD provides opportunities for education but that’s not always possible or even something everyone wants to undertake. That’s why it’s a good idea to set expectations when it comes to advice about managing IBD. The unwanted advice can come from many different sources and while it is not always easy to deal with, if left unchecked or unchallenged it can become overwhelming. Some people may keep insisting on pushing their idea, and that may mean reestablishing your boundaries until they are heard and understood.