Relationships

We recognize the importance of support from our loved ones during challenging times with IBD. Therefore, we asked PAC members and Parent Working Group (PWG) members about their perspectives.

Friends

How has your IBD impacted your friendships?

"I have a need to go to the bathroom more during FaceTimes. But also I’m nervous for having sleepovers because of having to go to the bathroom."
"It had made them stronger"
"Because I've had IBD for so long, I've gotten pretty good at figuring out which people will "stick around." I tend to feel guilty if I need to cancel or change plans, and having understanding people in my life has been so important."
"Actually, some of my friendships strengthen due to my IBD and my two best friends have really been amazing support systems through it all. They understand my IBD, how it affects me, how it's part of my identity, and most of all they celebrate it with me (they've attend Take Steps Walks and fundraised with me!)"
"It has made me closer to my friends who I have told about my IBD. They really watch out for me at school. If we are hanging out or going out to eat they make sure I am comfortable with the activity or place we are going to get food without making a big deal out of it."

What do you wish your friends knew about living with IBD?

"I am still a human and I want to be friends"
"Just how much effort/energy can go into care & staying healthy! Taking care of all the little things (special diets, prescriptions, appointments, etc.) is exhausting. Little acts of support mean so much, whether it's talking on the phone after a tough appointment, or bringing you food when you don't feel well."
"How it affects literally everything in my life, not always in a bad way but that it is a part of my identity and has shaped my worldview!"
"My energy can change so much from one day to another and it is very unpredictable. I wish they knew more of the basic understanding of what IBD is."

Parent/Child

How does IBD impact family dynamics?

Maintenance of Diet and/or Treatment Plan
Time Commitment
Mental Health
- Anxiety
- Fear of the future
- Aftermath and PTSD, especially in situations of rapid medication changing and surgeries

Are there any communication gaps when talking about IBD with your child? If so, what?

Communicating to each other
- Children may hide certain things
- Constant emotional challenge of what they are supposed to be doing vs what they actually do
- Learning curve to figure out when parents should ask how children are doing vs when children need to communicate their needs
Communicating about IBD with close and immediate family versus extended family

What resources/information would be important/helpful?

What each age group of patients wants to know about IBD
Managing financial aspects of managing IBD as a family
Parent-parent support systems and groups

Siblings

How have your siblings had to change their lifestyle?

"They have taken some time off of college work or classes to help me when needed."
"They aren't able to play sports as much as they want."
"I bet it was hard, especially when I was hospitalized - my brother would often stay with my grandma, so that one of my parents could be with me."
"I don't really think they've changed their lifestyle necessarily, but they have struggled mentally to accept it."
"No major lifestyle changes, focus on being supportive of appointments, medical decisions, and diet/activities."

How does your sibling feel that your IBD has impacted whether their needs are being met?

"They feel I get more attention"
"I think it's been hard for him, because when he was young he'd want to play and not understand that I was really sick, or dealing with debilitating fatigue."
"I guess sometimes they feel that the attention was shifted to be more on me while I was dealing with my IBD, and so as a result some of their need weren't completely met, it's a complicated situation though."
"Not majorly, partly due to being the older sibling. Perhaps being the younger sibling of someone with IBD would be a different experience."

IBD Impacts on General Social Life and Activity

"...I have been more open out invisible disabilities."
"It has made Friendship stronger because of it shows who true friends are."
"Fatigue definitely makes it difficult in terms of social life/activities. I have to be really mindful of where I'm spending my energy, and how to conserve it if needed! Making sure an event is accessible to me (bathrooms, seats, food I can eat, etc.) is definitely helpful when I go out, but I tend to enjoy spending time in familiar locations so I don't have to think about that as much."
"I've never been a spontaneous person, but with my IBD I really like to plan my activities just to be prepared, but I feel like there have been more positive effects actually. The friends who get it never pressure me or make me feel insecure about my IBD. They lift me up and I'm able to have a fun social life by doing things that *I'm* comfortable with!"
"I know that I get tired from doing activities with friends on the weekends, so I try to limit how much I do on the weekends so I am not exhausted for the next week of school. This can be hard because sometimes there is more that I would like to do."
"The way IBD has impacted how I handle COVID has been really hard on my social life. It has definitely shown me who the good friends are."