Tips Before Giving Advice to a Crohn's Patient

Crohn's patients are all too familiar with the unsolicited advice we receive from others about how to treat our disease. What causes a flare, what we can do to "cure" it – the list goes on and on. 

And, for some reason, those who give the most "advice" are those who don't suffer from Crohn's disease themselves, rather they heard it from someone else or have another anecdotal form of evidence as to why their suggestion works. 

It is not based on science, they haven't experienced the benefit themselves, and it most likely only helped one person in the whole world who has Crohn's – yet they just have to share it!  There is also the other group who offers advice, and that is the patients themselves

Giving Crohn's advice is a fine line

I like to trust that they may know a little more about the disease and what works in managing symptoms, but there is a fine line between sharing what worked for them and insisting that it will work for you.

I used to get frustrated upon receiving unsolicited advice about my disease until I realized it is just coming from a place of care. I have found that those who offer tips and tricks are only trying to help in an otherwise helpless situation, and maybe if it helped just one person, it could help me, too.

I only represent 1 single patient

But, this article isn't for those receiving the advice, it is for those who are giving it.  I would like to say I speak on behalf of all Crohn's patients when creating this list, but I am sure there are other opinions that I am not capturing. Every Crohn's patient is different.

This is my personal list of suggestions before giving advice on what could potentially work to improve the lives of those suffering from Crohn's, and this is true whether you are a patient or not.

My advice for giving Crohn's advice...

Consider the patient

Always consider the patient to whom you are offering advice. Understand their condition, personality, and current mood before continuing to make your suggestion.

Some people are simply difficult to advise or are under such duress at the moment that they cannot appreciate the suggestions you are offering. Wait until the right time (if there ever is one) before making your recommendation.

Lead with a disclosure

The absolute worst thing we, as patients, can hear is "You have to..." or "You should..." or "Have you tried...?" We don't like being told what to do, and there is a good chance that what you suggest we try we have already been done. 

However, maybe what you are about to suggest is truly valuable, but when phrased like any of the above, we will immediately put our guard up and close our ears to what you have to say.  Start by phrasing your suggestion as:

  • "I don't know if this will help you, but I heard..."
  • "This worked for me, however, I am not sure if it is always successful, but you might want to try..."
  • "I would love to be able to help you and I heard this one thing you might want to try..."

Conveying that you understand that the patient may or may not have success with your suggestion is critical, and giving us the opportunity to share our experiences with said suggestion will help.

Understand that we are not all alike

What works for one patient may not work for another. I, for example, found tremendous relief and success after giving up gluten. It honestly changed my life. However, I know that going gluten-free does not work for everyone who has Crohn's so I avoid telling people, "You should go gluten-free."

I share my experience with it and how it helped me, and allow them to decide if it is right for them. I have also been on the other end of "advice" and was told to avoid eating popcorn at all costs because it landed a patient in the hospital for a week with a flare. I actually love popcorn and it has no adverse effects on me. So while I appreciate the advice, it isn't necessarily true for all patients.

It's all about the delivery

I want to make it clear that you should not be afraid to offer advice to those you care about who are suffering from Crohn's. Your one suggestion could change a person's life. However, there is a more preferred way of doing it that may land better with the recipient and these are a few ways to ensure you are helping in the most effective way possible.

Patients, do you have any other suggestions for those who want to offer advice about your symptoms and managing your disease?

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