“Empathy is the only human superpower: it can shrink distance, cut through social and power hierarchies, transcend differences, and provoke political and social change.”
-Poet Elizabeth Thomas
We Are Living In A Time of Great Empathy
Understanding leads to Empathy
There is hardly an IBD patient out there that hasn't struggled with being misunderstood. We've all tried to explain what our diseases, and lives, are like, only to be met with some combination of disgust, pity, or aversion. Or maybe it was a well-intentioned effort at support, a suggestion to drink more tumeric tea, or a misaligned attempt to relate, with the story of that one time they ate a bad meal.
As we work towards a greater understanding of the real, complex, and often changing lives we live with IBD, we also work towards more empathy. After all, the more others understand, the more they can support us in the right ways, fight on our side, and empathetically just be present when there's nothing...
Adventures With An Ostomy
Guest Post by Abbey Corbett
Life.
Life. It’s a beautiful thing. It’s unpredictable. It’s exciting. It’s maddening. It can change in the blink of an eye.
The year was 2009. I was sitting with one of my roommates at college when something caught my eye on the muted TV screen. It was a photo of a stunning young woman in a black bikini confidently showing off her ostomy bag.
I was immediately drawn to the story because as someone who had been diagnosed with Crohn’s disease at the age of 8, I knew that a bag was almost guaranteed to be in my future. When I pictured it though, I pictured it 20, maybe 30 years in the future after I’d been married and maybe had a few children. After I had been able to get as much out of life as possible.
Sudden Turns When You're Not Ready
Fast forward 8 years later, I found myself sitting in my doctor’s office...
"I can totally relate, I once had [thing]"
-Anyone who finds out you have an autoimmune disease
"At least it's not cancer"
-Also anyone who finds out you have an autoimmune disease
It's Not Helpful When You Say That
No one knows how to talk to you about being sick. Especially as you are just entering life with disease, or processing a new diagnosis, you'll often find that 'real talk' is bypassed for a combination of pity, fluffy encouragement, unsolicited advice, and even some WTF moments. We like to think that most of this is well-intentioned (although unfortunately not all) but it often misses the mark because those around you are afraid to, or simply don't know how to talk to a sick person about being sick.
Learning to guide the narrative means, in simpler terms, telling people how to have conversations with you. It takes learning on both sides, and it's something I wish I would have recognized and embraced earlier on in my disease...
"You can't pour from an empty cup."
-Norm Kelly
Whatever lessons we've learned about self-care, community care, and compassion fatigue have been amplified by the 2020 global pandemic. The stress and anxiety, the loneliness, the mental effort it takes to process, and the unknown finish line have been brought to the surface for not just chronic illness patients, but most everyone in the land.
I've been in a comfortable place with my own IBD for some time now, and I've stated repeatedly that when you're in remission, it's your opportunity (if not obligation) to give back to those who are where you once were. After all, when I was disastrously sick, navigating a new diagnosis, and learning to live a life incurable, I took what I needed, and I found it from those who were so able to give, even when I had nothing to return at the time.
Now that we're collectively experiencing a similar-but-also-way-different health crisis, I've found myself on both sides...
Learning Life as a Parent of IBD
Guest Post by Tracy Jackson
Knowledge is Power
When I became pregnant, I read everything. I read parenting books, psychology books, what to expect books, you name it, I probably read it.
To me, knowledge is power, the more I know the better it will be to handle things as they come my way. As my kids Sarah and Danielle grew, I read about the “terrible two’s” and raising school age children. Having kids only 15 months apart, I started to get familiar with the teenager books and hoped I could manage the road ahead that they would be facing almost at the same time. Raising a teenager is hard. The idea is you are supposed to be giving them more responsibility as they mature, guiding them towards independence & adulthood. Adding Crohn’s to the mix of teenager really complicates things.
Danielle was 11 years old when she first showed symptoms of IBD. Over the course of 6...
Along the Journey of Crohn's
Guest Post by Erica Baker
I don’t know where to begin.
It has been suggested to me many times that I write down the story of my journey through college, getting a grown up job, getting married, having a baby and oh, yeah having Crohn’s disease. I am not truly sure where to begin with this story, so I will begin at the beginning and go to the end, though I know it will not be straight through, as no good story goes straight from beginning to end.
2009
College can be a trying time for anyone. Moving away from home, dining hall food, partying, and stress from an insane course load is enough to cause anyone a little digestive distress; especially someone who has food allergies, such as me. I spent four years trying to figure out where the “hidden” bathrooms were in each of my academic and resident buildings to ensure no one knew it was me getting “sick”...
Conquering Crohn's
Guest Post by Robbie Kochs
I want to start by saying one thing to anyone and everyone, whether you have Crohn’s Disease, IBD, a chronic illness, or anything at all. If you have a dream, a goal, a vision, go out and get it. NEVER let anything stop you from reaching this dream. You are too good for that. If you are passionate about something then go do it. If people tell you that you can’t accomplish this goal then go and prove them wrong. Fight the fight. Just know that when you begin the fight for your dream you will get knocked down. It’s inevitable. Obstacles will get in your way, but you know what you do? You get back up and NEVER give up.
One of my favorite quotes comes from a very famous man by the name of Rocky Balboa, and he says, “It’s not about how hard you can hit, it’s about how hard you get hit...
From the Bathroom to Kona
Grant Henry is Kona Inspired
We recently caught up to Grant Henry, a colitis patient and Team Challenge alum who is fighting for awareness with his campaign for an entry into the Kona Ironman World Championships, through the Kona Inspired contest. If he wins, he plans to wear IBD apparel, discuss it in the media, and do everything he can to increase awareness of this and Crohn’s Disease. View his entry video and vote here.
GBM: Tell us about your disease. What do you have, when were you diagnosed, any medication or surgical details you want to share, and how are you feeling now?
Grant: I suffer from ulcerative colitis and was diagnosed in the summer of 2006 after completing my undergrad. I have actually been lucky from a surgical standpoint, but I have been on a variety of medications over the course of the past seven years. Through trial and error, the two medications that have helped me...
What I Want You To Know
about Crohn's and Colitis
To all the caregivers, bosses, classmates, and friends. To all the boyfriends and best friends, to the girl that I see at yoga class. I want you to know this:
I have IBD. It stands for Inflammatory Bowel Disease. (It does not stand for Irritable Bowel Disorder, or anything else, and it’s not the same as IBS). If you know me, you probably know this. I talk about it frequently. I volunteer for various organizations. I have my elevator speech worked out, and I can rattle off definitions, facts, and statistics in my sleep. But do you know what that means to me, and the other patients who live day in and day out with IBD?
Do you know that it’s not just some medical jargon that I apply to my digestive system? It’s so much more than trips to the toilet and chronic fatigue and bi-monthly infusions and doctors’ visits.
This is my life.
We all know...
