Has anybody got an information card or small handout that explains the basics like 1. ME/CFS is.... 2. I need extra help with/can't be expected to do.... 3. Please..... I am going to explode at somebody soon. Today I had to explain to five people why I couldn't go home and come back later when they had had time to do X Y and Z to fix their own prescription errors. Had to explain that being unable to return later was not a choice, after I heard them say to their colleague on the phone 'she isn't happy to'. This one is the closest I can find to what I want I've seen these, not sure they are quite what I want: 1 2 Has anybody used something like this, and how does it go?
The MEAssociation one https://meassociation.org.uk/product/mea-alert-card/ I’ve not got one just sharing.
It is infuriating & such a waste of energy i do not understand why when you say "i cant come back later" they hear "I wont". I have often thought of making my own info, but when i have attampted it before i find people dont read/listen to it anyway. It drives me absolutely nuts. The problem is & will always be, that as soon as they see/hear ME/CFS they just automatically think "this person is tired"... & after that you may as well not bother saying anything. They just dont believe you when you say you cant- because doing so will make you ill. They cant conceive of it. I been dealing with similar stuff all week its just crazy-making If anyone comes across anything then I'll be interested, but in my experience if they're too dense to hear you right away without you having to fully explain/justify it, they wont read or believe a card anyway. sorry thats not very positive i am just so sick of it atm. sorry you having to deal with it @Haveyoutriedyoga
Not cognitively up to finding it, but wasn’t there one or more previous threads discussing information cards/ health passports?
I can sense your frustration, it is infuriating isn't it, I am so close to screaming at somebody but that will not help!!
@Haveyoutriedyoga would the communication cards at https://batemanhornecenter.org/education/mecfs-guidebook/ be of help?
In my experience I can give the best explanation possible and get told they understand, but time and time again one has to collapse in front of someone for they to actually believe.
Oh, this is infuriating, isn't it! One thing I have learned to do is never explain that I have ME, though. There's no point, they won't get it. One of my rules is that outside of a medical appointment, I never say I have fatigue. It's severe muscle weakness. It really is weakness a lot of the time, though sometimes fatigue would be more accurate; however, for all practical purposes they add up to the same thing: can't.
@Haveyoutriedyoga the best card that is currently available is, in my opinion, this one: https://stickmancommunications.co.uk/product/me-card/ The “plain” ME card wording is really good for severe ME I think. They also have this one with a slightly different wording https://stickmancommunications.co.uk/product/cfs-me-card/ I think they also have one for PoTS, sensory processing problems, lots of other health conditions.
Thank you and yes I was thinking of getting one for each and fanning them out and asking "which reason will convince you?"
I ordered the ME Association card. I am also creating a crib sheet with key statements worded in the way I've found most effective/impact full, so that I can use that when on the phone to reduce the thinking involved. I have also found and printed a CQC page about reasonable adjustments at GPs, will get an ME one-pager and a pacing one-pager and will carry copies with me if I need to go to GP and leave one with them if it comes up. Like to make no difference to peoples attitudes and actions I am sure, it's not my communication that needs fixing here, but if it helps me use less energy in the heat of the moment then that's one win. If anybody has a standard toolkit or suggestions for it then please do share! Especially any simple, impact full one page or less leaflets/printables. I know services often suggest assertiveness training for newly diagnosed people, I think they should offer coaching on self advocacy, influencing and comms/key messaging!!
I think without the decent official stuff to back it up self-advocacy is a stitch-up. My experience is that you either get someone nice and empathetic who seeks to understand, or you don't and unless something official is there to say they are the bad guy if they ignore you then you are wasting your breath (and get muttering of think you're special type thing). Definitely need better comms across common websites, and better cards. And these need to be ones that are specific to severity and symptoms - not generic saying 'sometimes or some people', otherwise everyone who reads it above assumes the mildest or that the sometimes means rare rather than might be happenning often in the person in front of them. I've often always found that saying something direct and specific to the task rather than mentioning the overall illness works to keep things short and effective - like I'll need to wait over there and sit otherwise I collapse, or I have a condition where if I've done too much in a week I'll be too ill to leave again for a few days to pick this up later, so could someone pop this up to me if there is an issue. So context dependent stuff and one-liners that are useful to those with the illness but don't necessarily mention everything might be helpful - EDIT: as a set of cards (with an official org at the top). We don't always need them to understand the 'illness' just 'verify what we are saying isn't exaggerated or untrue' etc.
Very true. I am always trying to take control of the situation, its hard to accept that so often we can't change things!
