PAC Moment: Listening, Validation & Understanding

PAC members weigh in on how friends and family can best support them when they share about their IBD or are having a hard time. Here's what they say:

The best thing is when they are non-judgmental and don't try to give unhelpful advice or get overly involved in medical details. I just want them to be understanding. Also, making it clear that they are willing to accommodate us without constantly bugging us about whether we need help or we're OK. - Shira

The most important thing for me is listening to and validating my experience. Even if a friend/family member does not understand something or get why I am upset, just hearing it is so important. The best way to support after listening is to research it! I get so touched when someone looks into what IBD is, or does more learning about surgeries, therapies, or other topics related to my health. It makes me feel so cared for. - Becky

I just want someone to listen when I want to talk or vent. But also respecting if I don't want to talk about it right then. It makes me feel really supported when my friends are interested in learning about IBD or ask about it. And just asking how to best support me is a great starting point! - Fionna

The best way a family/friend can support me is being able to listen. When I am having a hard time, it is nice to be able to vent to family/friends and have them give support. They can't relate if they don't have IBD, so if they can listen and give support it really helps. - Vanessa

Validating the emotional and physical toll it takes on a person and asking what, if anything, the person needs from them. I opened up to a friend from school recently and she was so validating and kind about it (her mom has it so that probably helped her empathize more) and offered to drive me to my appointments since I don't have a car and she does. - Maha

Making sure that a parent or friend asks whether we are seeking comfort or a solution when we share something. Over extending when we just want comfort can be hard for IBD patients to explain. - Quint

My family or a friend can support me by loving me at my lowest, by this they help me open up more about how I am feeling. - Makenna

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PAC Moments is a series of short stories originally shared by members of the Patient Advisory Council on their social media channels. They are being re-shared on LOOP as a way to reach more people and raise more awareness of IBD. We hope you'll share these with others and ask them to take a moment to read + learn more about #LifeWithIBD 💚💙

Fionna and Vanessa are co-leads of the PAC Communications taskforce. In this role, they help PAC members share their IBD stories and experiences on social media, #InTheLOOP and across the IBD Community - to raise awareness, build community and help others with IBD know they are not alone. You can connect with Fionna, Vanessa and the PAC on social media @ICNPatients or by visiting improvecarenow.org/patients and completing the contact form.