Hey Howard,
My name is Merl from the Modsupport Team here on Ben’s Friends
I too am in a bit of a ‘neither world’ with neurology (I’m not one diagnosis, but I’m not the other either) and my pcp, although he’s fairly good for most things, thinks he know’s it all about it and it’s frustrating because he simply doesn’t. I think it’s just easier for everybody going ‘MS’ because the general community have heard of MS. CIDP sounds very similar to COPD (Chronic Obstructive Pulmonary Disease) which in layman terms is the start of emphysema, a lung issue. I’ve found when using abbreviations some people (including dr’s) will go ‘Yes, yes…’ but really have no clue. Or there’s a ‘common list’ of symptoms, none of which I fit. But my symptoms say other wise. It can be really frustrating at times, especially with Dr’s.
I believe this is an issue for many people with rare conditions. When you give it a label nobody knows then comes the ten thousand questions What? Where? How? Why? etc, etc, … By giving it a name people know you often get the 'Ohh you poor thing…" look and comments, but they may have a little more understanding, reducing the ten thousand down to only five (thousand ). But I must say I haven’t resorted to making my own information leaflet.
Thanks for the email, Merl. Yes, many people think I’m saying ‘COPD’. That has had significant publicity over here in Wales, over the last few years. I think the MS route is the best way to direct those who have never heard of CIDP, to understanding what CIDP is like. Sorry for that clumsy sentence! I’m learning Esperanto - much simpler than English!
I have enough problem with English, using another language is WAY out of my realm So don’t be too worried about clumsy sentences. Heck, some days I’m lucky to string 2 words together, my brain fog swamps me. I used to work in a role where patience and word choices had to be carefully managed so as not to inflame a situation. I’m no longer working, which is a good thing because often the first words that come to mind now are not appropriate and more often than not full of expletives or just straight out offensive. But if I don’t get the words out and need to think about what I’m saying, I lose my train of thought, which makes me look dumb. It’s just safer for me to shut up and say nothing, I don’t offend anybody then.
Try reading “the spoon theory” google it and have a read.
I also have CIDP and autostatic neurophy
And I struggle to communicate just how I feeling at the time as it is different hourly. Most people view how I look and don’t understand that it takes a great energy to look like I’m ok. That great energy does not get replenished and then I suffer later.
Seeing the stories from others experiencing the same senserios makes a big difference and let’s me know that I’m not going crazy.
Keep up the stories and keep up your positivity.
Cheers
Darryl
). But I must say I haven’t resorted to making my own information leaflet.