Positively Real: Keeping the Discussion Real without Sugar Coating
Everyone with an “invisible illness” owes such a debt to Lisa Copen, founder of Invisible Illness Awareness Week. She has done so much to provide support to people with “invisible illnesses” like Rheumatoid disease. I don’t know if she coined that term, but she certainly popularized it.
This video was part of Lisa’s 2012 Invisible Illness Awareness Seminar Week an online virtual conference that you can still attend! I know you’ll enjoy hearing a veteran warrior like Lisa interview me on topics critical to fighting a disease and keeping it from defining you. Note: If you squint a little, maybe you won’t notice how much I’m squinting in the beginning of the video! It actually turned out great considering it’s a remote interview using Skype.
Some uplifting topics covered in the video
We discussed ways to balance facing the reality of the disease and staying positive.
- The value of a safe place to share the daily struggles.
- Why the media sugarcoats Rheumatoid disease.
- And why telling true stories about our battles with Rheumatoid disease, surgeries, or treatments IS positive!
A few excerpts:
Lisa: “How can patients deal with the invalidating… magazine articles that merely say things like ‘This disease can cause fatigue,’ when you’re sitting there with 700 symptoms”?
Kelly: “It’s hard for people who are struggling with a disease when people see commercials that seem to show that most people seem to do really well because people ask you ‘Why can’t you do what we see in that ad?’”
How do we stay positive with a chronic disease with daily realities of the illness?
Lisa: How do we keep from getting stuck or being negative with serious painful illness like RA?
Kelly: “Being positive means accepting the realities & being able to go forward. And still love others and still be optimistic and still hope for the future… The people I know with chronic illness – they make more of an effort than anyone else to be optimistic, to be positive, to be aware of others’ pain.”
Lisa: “Why is RA Warrior so unique? There are so many who seem to have a lot of compassion for each other?”
Kelly: “Because it’s a judge-free zone. If you come for help, we don’t think you’re whining. We’re going to try to help you find information after we let you know you are heard.”
DON’T MISS THESE:
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2) Win a Pentax camera or an iTunes gift card with RPF’s awareness contest!
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