Originally Published July 2018
Happy Hope Warrior Wednesday! This week I am so excited to talk with Shawn. She’s a brave woman who speaks her truth on Instagram and is a huge IBD and mental health advocate in the online community as well as in person. I’ve been lucky enough to meet Shawn in person and is she’s just as funny, kind and supportive as you would think. I’m so glad I can share her story here and encourage you to give her a follow on the socials and check out her website. Thank you Shawn for sharing your story! Here’s our chat.
You have a huge impact advocating in the IBD Community. What made you decide to start sharing your
Initially I decided to share my story in 2014 after having one of my first Jpouch surgeries. I really wanted to show my raw and unfiltered life with Inflammatory Bowel Disease. I wanted people to see and understand that our condition is much more than a ‘bathroom disease.’
This road with UC hasn’t been easy for you. Will you share a bit about your history? (Surgeries, medications,
lifestyle changes, etc.)
When I was first diagnosed with Ulcerative Colitis at 17 years old I didn’t truly understand what it meant or what it would do to my body. For years thereafter, I struggled. I tried various medications: corticosteroids, 5-ASAs, you name it, I’ve tried it. After years of trying and failing medications, changing diets, random online “cures,”
ect. I finally decided to have the J-pouch surgeries. Since 2015 I’ve been living with a pelvic pouch. It’s completely different from life with a colon, but it’s a major improvement and ultimately saved my life!
How are you doing right now?
I’m doing pretty well right now. Even though I have a J-pouch, I am still autoimmune, I still have IBD and I still live with inflammation. I’ll likely be on medications for the rest of my life, but I’m so grateful for how far I’ve come! I’m able to fully live and appreciate my life now!
I just recently went through a miscarriage myself, and it is not easy to talk about with others. I’m always inspired by your bravery and honesty in sharing your experience. I know there’s really no words anyone can say to provide comfort, but do you have any advice for anyone else going through the grief of miscarriage?
Take time for yourself. It’s a huge change and a big loss. It hurts. Give yourself permission to feel. Allow yourself to grieve. Sometimes the best way to protect our mental health is by allowing ourselves to be vulnerable and breakdown.
Whew, that’s a lot of heavy stuff. 🙂 What do you do to manage stress?
I really try to invest more time in things I love. I love writing, I love traveling and I love my little god-daughter Tamia. She definitely picks me up on my down days.
Who do you turn to for mentoring or advice? Who inspires you?
So many people! It just depends on the topic! All of my IBD friends inspire me so much with their strength and knowledge. If I need advice on politics, bills and that type of advocacy I turn to Brooke Abbott, she’s an amazing IBD advocate. If I need someone to review my work for accuracy or just information on IBD in general I turn to Sara Ringer, Dan Sharp and Amber Tresca. They’ve been amazing. If I need someone to talk to who I
know understands me and can give advice from a first-hand perspective I usually run to Kelly Crabb. There’s so many more! The IBD community is so big and amazing I just have too many to list!
Tell us about some of your favorite things
TV: The 100 and Black Mirror right now
Place to visit: London!
What is the thing you are most proud of accomplishing?
So far I think I am most proud of making dean’s list. It was hard and took a lot of time and dedication, but I did it!
What is something you are looking forward to?
My next international travel adventure! I recently decided to start traveling and it’s been such a whirlwind of emotions, but I absolutely love it and cannot wait to leave again! I know Mental Health Awareness is a huge passion of yours. How do you best care for your own mental health?
A huge part of my mental health / self-care routine is breaks. I have to incorporate breaks into my work and advocacy because otherwise I’d probably run myself ragged. It’s easy to care for others. It’s almost like a second nature for a lot of us, but we have to remind ourselves to save some of that time and energy (for ourselves too). If someone was in the waiting room at the doctor with you and was just about to meet with the doc for the first time after being diagnosed with IBD, what would you tell them?
It’s okay to not be okay. It’s okay to be emotional. It’s okay to not know everything. Be prepared with questions, pen and paper for notes, but also remember that you’re not perfect. Give yourself permission to feel and don’t put so much pressure on knowing everything.
What keeps you hopeful?
I try to stay hopeful by reminding myself that better days will come. It’s easy just thinking of where I started with my IBD journey, to now. I also find positive affirmations really helpful. I try to have an affirmation, quote or bible verse on my phone / lock screen where I can see it as a constant reminder to remain positive.