People in support groups should always remember that members are not qualified to give advice. You should use extreme caution when thinking about trying anything new based on another member’s experience.

Everyone is different

It’s great that people in support groups can relate to your symptoms and struggles. They can be a fantastic source of encouragement and lived experience. You can learn some wonderful things – I have #IBDSuperHeroes to thank for the discovery of things like ostomy underwear and travel certificates!

Hearing what helps others can be super useful, but many conditions are too complex to blindly follow advice based on someone else’s experience.

By all means, ask questions and for people’s experiences, but always remember that they are not on your journey and they do not have your body. They do not know your complete medical history.

Don’t risk your own health

If you don’t know or understand what is going on inside your body thoroughly enough, you genuinely risk doing more harm than good.

I’ve previously written about some of the incorrect tips and tricks I’ve seen shared by influential accounts in the IBD and ostomy community. Tips that have the capacity to have a negative outcome. Remember, influence doesn’t equal knowledge!

What helps one isn’t relevant to another

Using IBD as an example: There are so many types of Crohn’s disease and ulcerative colitis. So many symptoms that differ from person to person.

It makes it pretty impossible to advise on food when one person has constipation and another has diarrhoea. Plus, there are previous surgeries, intestinal scarring, strictures, and adhesions to consider. Changing your diet could risk things like intestinal blockages, flares, and nutritional deficiencies.

There are so many different treatments. What works for one doesn’t work for another. Other medicines, even supplements, may interact with something else someone is taking. This is why whatever you’re thinking of doing should be discussed with your healthcare team first!

In conclusion

I urge you to use some common sense, do your research, AND talk to your medical team before making any changes. I also urge you to think about how you respond to people in groups. Make it clear that it’s simply your personal experience, not advice. A sentence should never begin with “You should try”