Sometimes we give up when others outside our support here don’t understand what we are going thru.
Several reasons & ways of changing this… (but only) if or when we feel able to.
1 reason is to raise awareness for us all. Another 2 to make ourselves stronger. A third 3 to encourage empathy generally. It’s not just about FM, it’s not just about all invisible chronic pain diseases, it’s about everybody who’s different, whether physically, mentally or identity. Every time we perhaps manage to do it, we are raising mutual understanding. That isn’t to put pressure on us tho, that would not be self-caring/self-understanding.
I’ve put a 4th and 5th very important reason down below, at the end.
To get thru to others (incl. “our previous selves” and even our present selves!) we need to increase empathy by relating to known experiences and to use pictures and memes. Experiences would be the flu or a cold. First it helps for people to remember (by being asked by us) what a flu feels like, and then we can tell them in a build-up: Now imagine you had the flu “several” days a week, and the other days a week just a cold. Pre-fibro I’d’ve really needed to hear storyies like: Only 2 hours of non-REM sleep… feel like I’ve been in a car crash… sun burnt … needle pricks all over my arms… IBS… sensory overload… nausea… And if people can’t take that and shun me or don’t ask that darn question anymore, they’re very welcome.
In the last few months I’ve been developing various “percentage”-scales - first for others, but it’s also become useful for myself. I’ve been using 60-90% for how “well” I’m feeling and the typical “pain number” of 1-4 of 7 (incl. loads of treatment and not overdoing it too much). But my colleagues want to know “if/when I’ll get better” or “when I’ll be back” after the jabs. For the first question my answer is now that for my activity level compared with pre-fibro (let’s say 10h/d) I’m now aiming for 40% , after fibro brought me down to 20% and esp. meds and doc treatments brought me down to 5-10% and my own physio & supps were bringing me up again. For the second question again the jabs have brought me down to 5-10% and with a lot of extra physio & supps I got this up to 30%, 2nd jab brought it back down to 10%. I’ll be back when I can again start aiming for 40%. So I don’t paint pictures any more - they know that - I just put it in a number. That’s the 4th reason it’s good to explain: So people can get the perspective on what may be coming up.
A different way of explaining how I’m feeling is also very necessary in interaction, a 5th reason it’s good to explain how I’m feeling. At the moment I can only meet people for 30 minutes. Today I had a 20 minute phone call to get someone else help which knackered me for about 2 hours. Online 60 minutes can be OK, depending. All altho I’m mentally and emotionally 100%, no fog, no depression, no anxiety etc. So no way am I gonna pretend I’m fine. Whether I feel pain & exhaustion coming on or I don’t after a time I say, “OK (not!: sorry), I’m at (or over) my limit, let’s continue some other time”, Bye and put the phone down or go in! So “over the limit” would be another way of saying how I’m feeling, even if I’m not exactly explaining it. “Why didn’t I pick up the phone the other day?” “Cos I was over the limit.” No discussion.
The “Spoon Theory” is one well-known example for a ‘picture story’, originally more for fatigue, but it can be adapted for pain as well: the less spoons the more pain.
Some people imagine putting pics and memes like the above up somewhere or on T-shirts in non-web life, but I don’t know if anyone really does…? O.o