Patient Perspectives on Mentoring

The PAC is working to expand a patient-to-patient mentoring program. They have a lot of momentum right now and PACer Christian Hanson and his task force members wanted to share why mentoring is important to them and how they see it making an impact in the lives of others living with IBD.

When I was flaring in high school, I had no friends with IBD. There was no one to talk to who understood my experiences. Even my best friend since middle school, Daniel, didn’t know what I was going through. This year I have had the pleasure of working with chronically ill high-schoolers through my local hospital, and I’ve seen the impact that mentorship (and a community) can have. I believe that having a person in my life who could have empathized with my illness would have helped me open up to my high school friends, which would have helped the loneliness. I would like mentees to leave this program feeling like they can share their IBD experiences with friends.

Before I attended Camp Oasis, I felt very sad and alone and most of all embarrassed because I was different. I looked at myself in the mirror and had little to no confidence that anyone saw me as anyone other than the sick girl. I often felt ostracized. After attending camp and meeting kids and older teens and adults who were so confident and positive about their disease, I no longer felt like I was just the sick kid or ashamed for having a chronic illness that I couldn’t talk about. Talking to people just like me who were going through the same things as me gave me confidence and a purpose to see myself with value. Working with high-schoolers, I can see this same impact occurring as high school is a time where lots of judgement is taking place among peers. If I would’ve had this type of program available for myself, I wouldn’t have been as afraid to join sports or clubs or go to prom, because I would’ve felt confident in myself no matter what I was going through with my disease at that time. I want mentees to leave this program with the same impact, which I think will greatly benefit them as they advance into college and beyond.

My vision for this project is that all kids and young adults with IBD throughout the country will feel united and empowered. No one will have to feel alone in their struggle. Even positive news will be celebrated among those who understand (i.e., “I just tapered off of prednisone today!”).

Kids and young adults with IBD will no longer feel like they have to hide the realities of IBD from their friends and peers. A mentorship program will help them cope and and empower them to speak up for themselves.

I see this programming giving others the confidence to live their lives to the fullest by talking with mentors who have overcome similar challenges they have been faced with through IBD.  When I was first diagnosed, I was about 10 years old and living in a small town where no one talked about health issues.  I knew absolutely no one with Crohn’s or Colitis and I felt isolated. The biggest impact for me was meeting others with IBD.  I created a network with others who could share their fears and concerns as well as help me to get over my own fears.  Having mentors for younger patients will put them at ease and give them the confidence they need to live their life to the fullest.  As a younger patient, I never had a mentor and I feel as if I would have been much more confident had I had someone to talk to who understood exactly what I was going through. Doctors are a wonderful resource but they don’t have all the answers to the everyday questions like “How do I tell my friends that I’m sick?” or “What do I do if I go to a dinner and I can’t eat any of the food?”  The mentor and mentee relationship can do wonders for the health and well-being of every patient.