So I am planning on doing a presentation/talk on chronic illness and invisible diseases. I know many with several different diseases and I thought it would be interesting to share and talk to people about living life with a chronic illness. So....with that in mind what are some tips/stories/ideas you would share with people. I don't want people to feel sorry for me but I want them to truly understand what is going on and how hard every day life is. I have an idea to give everyone who comes a bundle of spoons and go through with them the spoon theory and have that interaction and hands on with the idea. And do any of you have any other hands on ideas?
There is an analogy about stress involving a glass of water that I've always thought would be a good way to explain chronic pain to someone who just has no concept. The idea being that you get them to guess how heavy the glass is, then point out that the actual weight doesn't matter if you have to hold it all the time. The longer you hold it, the heavier it feels. Pain is the same. To some, a few joint aches may seem like no big deal, like holding a glass of water. Sure, anyone can handle a little pain! But those of us who deal with chronic pain don't get to put down our glass of water. We must continue holding it, and are forced often to ask for help holding it, while enduring the funny looks we get when asking help with such a 'simple' problem. This also explains why we have the need for 'so many' medications. While to the general world, the number of pills a lot of us take is unreasonable and, to their minds, possibly unnecessary, if it helps us hold that water longer without help, it's worth it much of the time.
EDIT: This probably could work quite well with water bottles! Get them to hold the water bottles at arms length, perhaps?
The weight of the pain has it’s limits! At least with me it does. I hit a certain point and all bets are off, bring out the drugs.
The Arthritis Assoc. used to have agenda’s formatted for the newly diagnosed which were helpful as hand-outs.
An ice breaker such as your spoon idea is great! We tried to have our mtg.'s on Sat. afternoon’s so ppl could get baby sitters. One speaker on one subject will draw more attendance, such as a Nutrionist.
The media will announce your meetings for free if you give them enough lead time.
Have fun!!!
I’ve always felt as though my body is wrapped tightly with saran wrap limiting my ability to move. Perhaps they could wrap an arm in it and try to move it? Good luck
Thank you all so much!! I am really looking forward to putting this together!!!! :)
the important thing is to include something in the talk that is either hopeful, or humorous, or light. You want to affect people in a positive way. So to have them understand is good, but then what do you want them to do as a result of now understanding?
Hi! I reached out to Dave DeBronkhart, who does a lot of speaking as a patient, and he invited me to send you his e mail address so that he could take your questions and use them on his blog about speaking, helping both you, and anyone who might have the same questions. I don't want to post his e mail address here publicly without his permission, so please add me as a friend and I'll send it to you. He is an author, a cancer survivor, and well known in the empowered patient world - and he has done a TED talk.
PS if you haven't done much public speaking check out toastmasters. I have learned a lot there, and I still use it as a "lab" for new speeches.
Thank you so much! :)