For my part, I love it when people tell me they’ve read my writing. Especially when they don’t have IBD themselves or have a close friend or family member with the disease. While I do my best to reach people with IBD so that they have the information they need to make treatment decisions and live better, I also want to reach people who aren’t touched by IBD in order to recruit them as allies. After all, this is the very heart of awareness: people with IBD are already aware. We must reach those who have no reason to become educated about IBD, and offer them the tools to become aware.
“This is a walk to raise funds and awareness of food allergy.”
“That’s strange,” he said to me, and made a face of disbelief.
“Why is that strange?” I said.
“Because you think it would be cancer or Alzheimer’s or something.” Continue reading
Cooper: “TARS, what’s your honesty parameter?
TARS: “Absolute honesty isn’t always the most diplomatic, nor the safest, form of communication with emotional beings.”
Having a chronic illness is rather like having a secret. How do you go about telling people of your illness? Do you tell them at all?
I saw a posting in a closed IBD group recently where a member was asking for help in how to request accomodations at work without having to get specific about health circumstances. Advice was offered on how to handle the situation discreetly, until another member demanded that the advice seeker should “tell the truth.” “Why would you lie?” the response continued.
Not revealing the whole truth is not the same thing as lying. I was concerned about the helpfulness of this exchange, and I failed to see how it was productive for anyone. I don’t believe any person has the right to question another person’s decision to not disclose a health situation. We don’t owe each other the truth. Continue reading
What is advocacy in the inflammatory bowel disease (IBD) community? Even advocates don’t agree on exactly what this means, maybe because we all advocate in our own unique way.
My advocacy started in 2000, shortly after undergoing j-pouch surgery, when I began writing the IBD topic site for About.com. The site has undergone several changes over the years, but what I’ve consistently tried to do is to provide quality, accurate information about IBD that anyone can access, for free. The site has been amazingly successful, and it has been rewarding for me both personally and professionally.