Why we think IBD should be considered a Chronic Illness

Published on Nov 25, 2013

Elliott and Rob from Gut Inspired, a group of Canadians living with Inflammatory Bowel Disease (IBD; Crohn’s Disease and ulcerative colitis) talk about why IBD should be considered a ‘chronic illness’. When living with IBD, understanding and support are incredibly important. Imagine a world where you don’t have to explain what living with IBD is like because your friends, family and employers already know, where the government sees digestive disease as a priority and where people experiencing IBD symptoms are identified and diagnosed right away. We think this is possible if you keep taking the time to tell others what it is like living with IBD. Elliott, and Rob share from their first-hand experience living with IBD and challenges they have faced in hopes that their actions, might help others. We hope you share your story too. For more information about Gut Inspired and living well with IBD visit www.gutinspired.ca or join the conversation. www.Facebook.com/gutinspired www.twitter.com/gut_inspired | @gut_inspired

Life with Chronic Illness

My life started off “special.” I was born with an usual “birthmark.” My parents and doctors didn’t know what it was. After a biopsy when I was 10, they at least determined that it wasn’t cancer or dangerous but would grow back if we ever tried to have it removed–it grows, you see, and its roots are in the muscle. It’s not a pretty thing. I can remember wearing my modest two-piece as a little 5-year old in a friend’s yard. When she asked if we could go inside to play, her father replied, “Not until she wipes that mud off of her.” I looked all over myself. I couldn’t find mud anywhere. Then, her dad pointed to my stomach–right where my birthmark was. I didn’t want to play anymore and walked home.

Lots of my friends had allergies, but none of them seemed to have them as bad as I did. Nightly allergy shots were lots of fun as a 3-6 year old.

Many people also have asthma, but I seemed to be the only one of my friends who did. I tried to keep up with my friends, and I was able to play sports. I just wasn’t that good [...] continue the story

It’s All About Control

10 ways to maintain a sense of Control with a chronic illness

It’s easier to cope with chronic illness if you feel that you have some control over your life and your health. Feeling that everything is just spinning away from you makes life more difficult. Here are my first and best so far ideas. More suggestions are always welcome for a list like this. Please leave them in the comments. We all love to hear tips.

With chronic illness you are forced to be your health manager so it is up to you to gather information and to make better decisions. You need to learn skills for this complex task as you go along, because the days of good health and no worries are behind you, though there is always the hope of having them return. As you go along you will find a management style you are comfortable with.

The first suggestion I would make is to join an online group or community.  They can be a great source of information and encouragement.  It’s harder to find a physical real-time group than one that is on-line. It is also easier to spare the time for online efforts. Yahoo has a more old-school [...] continue the story

About How To Be Sick

I’m the author of “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” (Wisdom Publications 2010). The book has over two dozen tools and practices to help people live well with chronic pain or illness. It’s Buddhist-inspired but is non-parochial: the practices in it will work for anyone. The theme of the book is that even though our bodies are sick or in pain, we can learn to live peacefully and even joyfully. For reviews and other information, including where you can order the book, please go to http://www.howtobesick.com Thanks for watching the video! Toni Bernhard

December 17, 2010

How to ask for help when chronic pain or illness strikes

By, Toni Bernhard, JD September 2011

How many times have you said to a friend or relative in need, “Let me know if there’s anything I can do to help,” and when you didn’t hear back, fail to follow-up? I’ve lost count of the number of times I did just that—fail to follow-up when I didn’t hear back from someone in need, even though I would have been happy to help in any way I could.

Yet, despite this pattern in my own behavior, when I became chronically ill and didn’t get back to people who offered to help, I decided that, because they failed to follow-up, their offers weren’t sincere.

I learned otherwise quite by chance. A friend came to visit and showed me an exquisite handmade dress she’d just bought for her granddaughter at a local boutique. When I told her how much I loved it, she asked if I’d like to get one for my granddaughter. I said “sure,” and before I could get “but I’m not able to go shopping” out of my mouth, she was out the door.

She returned shortly with the dress in two sizes for me to choose from. I picked one, wrote her a check and, [...] continue the story