This weeks post is by another guest writer, Kate. As I finish out the end of the semester, I am extremely gracious for these guest writers as it allows me a break, but it also allows you to gain insight from other people in various situations.
Today’s post is all about Kate’s story and the importance of building a community around you when you have a chronic illness. She has started an amazing project that I hope you all love and check out. But before we jump into the post, make sure that you subscribed to my blog to get email updates every time I post, and follow me on Instagram, Facebook and Pinterest to get more updates from me on my day to day life.
Hi friends and followers of the Gutsy Feeling blog!
First, I’d like to say a huge thank you to Nathalie for allowing me to introduce myself, and a project that I am working on, to all of you. I have enjoyed following her story, as you all have, and have learned some great tips and tricks from her posts.
Okay, so, who am I and why am I here?
My name is Kate and I, like Nathalie, have Crohn’s Disease. I was diagnosed when I was 18 and in my first year of university and for some time that year I traded in my dorm room for a hospital room and said goodbye to parties and hello to infusion clinics! Although I was very ill for many months leading up to my diagnosis, there was a disturbing pattern of misdiagnosis that led up to my eventual diagnosis with Crohn’s Disease. Looking back, I am quite alarmed by how many physicians mixed up my symptoms with a bladder infection! My disease was quite advanced by the time I was diagnosed and within about four months I ended up living in the hospital for a month to receive TPN (a method of delivering nutritional needs into your bloodstream) in order to get my strength up for a small bowel re-section. That was just over 9 years ago and I am blessed to report that I’ve had my disease well controlled since surgery. Although I do go through multiple periods of flare ups each year, since my surgery I have not experienced the debilitating pain I dealt with that first year I was diagnosed.
I have gone through many ups and downs living with this chronic illness and in the early years of my diagnosis I often wished I knew someone else who had Crohn’s Disease I could talk to for tips or even just to commiserate. I looked to books for some comfort but found that there was very little written from the first-person perspective about living with either Crohn’s or Colitis. Most of what I found was highly medicalized and full of jargon. I also struggled to build a healthcare team that believed in a holistic approach to managing my illness. All of this meant I felt quite alone and, was left to my own devices to deal with the day to day impacts of my diagnosis. I fumbled through those first few years feeling completely paralyzed by the fear of becoming so sick again. I went to extremes trying to figure out a diet that worked, I cut out alcohol entirely for a year while in my undergrad and I became obsessed with figuring out how not to lose myself in the illness experience again.
Because of these experiences, I tried to find ways to connect with others in this community. I started a Gutsy Walk in my hometown and was so inspired to meet others who I share a diagnosis with and to hear their stories. The annual walk was such a source of healing for me but I live a pretty transient lifestyle and didn’t stay home enough to continue to organize it. But my interest in community building has stayed with me and I have since been trying to find another way to create connection and be an advocate. And this fall I launched a web platform where I hope to do just that!
The Crohn’s and Colitis Collective
I’d like to invite you to join me in a project called Crohn’s and Colitis Collective. It is a patient narrative and photojournalism project with the goal of promoting honest, open dialogue in order to raise awareness about the patient experience of IBD and to reduce the isolation that many in this community feel, especially upon first diagnosis. My hope is to create an online community where people with Crohn’s and/or Colitis (or their caregivers) can share, learn from and connect with an awesome tribe of peers.
I would love for you to check it out and consider contributing. If you are interested, you can visit the site at: www.crohnsandcolitiscollective.com or find us on Instagram: @crohnsandcolitiscollective. You can also reach me via email if you have any questions, comments or feedback on the project at: firstname.lastname@example.org.
Thank you so much Kate for sharing your amazing project with us. It is so important to have a community of people supporting you while living with a Chronic illness. Through your story you have shown us that when we join together we start to feel much better and less alone. I encourage you all to check out her website and to contribute to the website if you are interested.
Have an amazing start to December!
Your trusty gutsy gal,
P.S. If you would like to collaborate with me or have something you want to share on my blog, send me an email at email@example.com. xx