Idea for how to explain some communication symptoms to others

[budgiefriend]

I have been testing this now for several weeks, and it is working very, very well. Nobody has asked me for more information or to explain AND BEST OF ALL. People have responded by being patient and understanding.

I have symptoms such as not being able to think of a word, mixing up my words, stopping altogether, pausing, and stammering when talking. I also have problems with short term memory.... like sometimes about 10 seconds after I'm told something!

I now say this the moment after I recover following one of these symptoms, before they have any opportunity to respond: "Please excuse me, I have a brain problem (or sometimes I use the words brain condition or just illness) which causes me to have difficulty talking/with my memory (whatever fits the situation). I never know when it's going to happen. Please be patient with me."

So far, everyone has been extremely kind when I say this. I find that people are far less kind when you say words like Fibromyalgia, M.E., chronic pain, fatigue, memory problems, etc. I think this is because people understand that when the brain is messed up, you can't do anythng about it, and that it doesn't mean you are a scrounger. Maybe they are terrified of losing their brain function, too, which could definitely help with the sympathy. If you just say 'I have problems remembering things' or something like that, they invariably launch into something like, "Oh, we all do when we get to a certain age." or telling you their latest memory gaffe.

I don't know about you, but lately when I use the word Fibromyalgia, people seem to want to tell me about somebody they know who 'claims to have fibromyalgia or CFS' but who they are sure is cheating and just using that as an excuse to be lazy and get benefits. Their contempt of the condition and their skepticism will be obvious when they start in like this. It's hard to deal with and there is no way you are going to convince them.

If you decide to try what I am doing and use the words 'brain condition, brain problem,' etc. I would be interested to know how it works for you. As I read more and more about the changes in the brain function of Fibro sufferers, I realize that giving that as a cause is probably even more valid than using a name for your illness like 'fibromyalgia', which as one wiseacre informed me, "just means pain in muscle tissue" as if to say it's not a reason for all I am experiencing.

Best of luck to all of you as you struggle with other people's perceptions and reactions to your illness.

[jillylin]

Hi,

I usually say I have a problem which makes my brain disfunction from time to time. It does help as people are more patient waiting for my replies.

Hugs

Jillyxx

[Fibrofoggiest]

Hi there thank you for this, I'm always forgetting things I've started to say and feel such a fool coming to a grinding and brain numbing halt. Some friends understand to a degree but when it's other people I just get very embarrassed and flustered by it.

Well done jilly, yours is a good line too, thank you

Foggy x

[TheAuthor]

Hi budgiefriend

Thank you so much for sharing this with all of us. I can relate to your issues here and why you say what you do! I think it is a brilliant idea as nobody has the right to judge our illness over another, and it is quite belittling when they do. I think that you are a wonderful, courageous and brave human being. I suffer with some terrible memory problems when I start to get tired and it can be very frightening not too mention embarrassing.

You take care my friend

Ken x

[bbstport]

I too suffer exactly the same short term memory loss, forgetting what some one said briefly before, stopping mid sentence etc. I was seen by a psychiatrist and a neuro psychologist and she said it is caused by fibro and meds

but I do not have early stage dementia or anything. people who are close under stand the problem and do not try to finish sentences for me or interrupt etc. people who don't know u try to rush u along etc.

belinda

[budgiefriend]

Thanks so much for your comments. I think others here at HealthUnlocked will appreciate knowing how many of us have these problems and how we feel about it as well as how we handle it. You are all so kind and helpful!

[Jigwam]

I have a little card in my wallet that I pass people when I'm having trouble. It's Brightly coloured and friendly, on one side it says -

"Brain Farts"

On the other side it says -

"Be Calm. Sometimes my brain have difficulty or just stops, it's perfectly normal and it will pass shortly. If there is somewhere to sit down that might be good. Thank you."

People are pretty cool about that.

x

[budgiefriend]

That's a really good idea, Jigwam! Also, I loved your F-word poem/rap. Is it okay to copy it and show it to a few other people I know?

[Ginsing]

There are some really good suggestions on here well done every one! I think some people just perceive us a s stupid which we are far from being.

Even when people accept you as having problems their conceptions of how we manage to live our lives that is where the Spoon theory steps in.

Have a good evening ALL

xxgins