So how do we reverse this? How do we get the care we need, and how do I explain this to you so that it can't be used against doctors in a negative way?
I got the answer to both questions from Elizabeth Mizioch-Crawford, through our participation in the But You Don't Look Sick group.
Okay, help me out... I constantly act less sick than I am. But then I end up being whining about it. Any tips on how to keep my big mouth shut? I *want* to not complain. I'm just very bad at it... lol
Not sure it's a matter of complaining as it is stating the facts. Part of being able to deal positively with illness (for me anyways) has been to give it a voice. It takes practice but being able to state accurately and in understandable terms has really helped me. It shuts up those that aren't really helpful anyways and allows our true supports to empathize. Try to change your thinking that through positive, verbal expression of your pain/illness then you can acknowledge what you are going through and educate others on your journey. I wish you all the best.
OOoo.... if you want to tell me more, Elizabeth, I'm all ears.
Lol! What would you like to hear? :)
How to state my illness in accurate and understandable terms to shut up the unhelpful folk and allow the true supports to empathize... (for starters ;)
Docs seemed to get it when I would explain my daily living limitations from nerve pain such as not being able to dress myself and not able to walk up stairs. I think it was a matter of stepping back and seeing my illnesses from the eyes of someone who has never been ill. I try to find the simplest terms; "my back feels locked and it feels like a screw is being put in when I bend like that" "I need to take short naps through the day because laying in bed for more than an hour makes my back stiffen so I can't sleep through the night". Things like that.
That's when it hit me: Tell the story. We chronic patients always lament, "If they only knew what I was going through..." We are responsible for telling our story, not just as a list of symptoms, but as an experience. And that's the thing! If you've had the actual experience, there are little details that cannot be learned from any Merck Manual or online site. If they only knew is the point! We have a secret understanding that can't be faked. And doctors have seen enough REAL cases that they will recognize truth when they see it. That's the REAL reason we respect doctors... It's not for that certificate on the wall. It's for the REAL LIFE experience they have. If we tell our experience, they'll match it up against theirs, and as a result, those who are faking or drug seeking will stand out like sore thumbs. Done!
But there's still the rock and the hard place: most doctors don't have TIME. We must demand it. Gently, but we---and I mean doctors and patients and law/policy makers alike---must demand that patients have the time to share their experience, and doctors have the time to listen. We are making some very unrealistic expectations of some very good people by running our health care system on a clock and a bottom line. Everyone is hurting as a result.
Let's slow down. We'll all make fewer mistakes that way, and have fewer communication failures as a result.
Edited to add:
This was such a great comment that I had to add it to this to the post itself. She said it better than me ^_^
Deb aka AbcsOfra
I couldn't agree more that doctors need more time to be with patients. And can we also allow patients to stay with doctors and not have to doctor hop because of insurance changes? Now wouldn't that be lovely. When we have to start all over again it is like being thrown into a pool if ice cold water and having to learn how to swim all over again with a new coach. It stinks!! Yes, more time for each visit and more time available to stay with our choosen doctors and not be forced to change due to insurance changes. With both of these I really believe a better form of understanding would naturally take place.