@sunkacola actually, I feel like a lot of people feel shame when it comes to this. Especially early in their diagnosis. I'm not saying it's right, but I believe it is part of the journey. I also am dealing with extreme chronic PTSD so there is quite a bit of shame that comes from that, but the deal is I spent my whole life, since 9 years old, not understanding what was wrong with me. Feeling as though I would eventually find out that it was something I just hadn't done yet. That eventually I would be able to fix whatever was wrong, and now I find out that that isn't the case. Since I've had it for almost 30 years and it's only gotten worse, and only got a diagnosis last year, it's still something that I'm getting used to. That I may be able to ease things but this is my life. There is some shame that comes with that. Honestly I feel a bit of shaming from you because I feel ashamed. Interesting choice for a moderator of a chronic illness forum.
Short version: I think it can both be helpful to put the emotional and the social issue into the equation and to keep it out of it, but I side on it being more helpful to keep it in - in
order to get it out as much as possible, not to hold on to it, but to let it go, pacify it....!
Of course you're right, Tibro, it's unchallenged that many feel shame. And feeling a-/shamed for feeling shame doesn't make it better. Luckily, I'd got my many mental issues sorted out before fibro came up, and social phobia/anxiety being the main one, bits of that can of course still come up again, inklings or more of shame feelings included. This will also make us feel shame even when it isn't intended. And again we will often feel shame about feeling shame about the shame, 3 layers once it starts (plus mixes in with memories = other issues, too).
When
@sunkacola said "not part of the equation" that will have been well meant as encouragement to try to keep it out of the equation. In my experience however, the
knowledge that things we feel are unnecessary often doesn't make things better, it often makes them worse.
I know
@sunkacola is well versed with dealing with panic/anxiety. One of my most powerful 'mantras'/mottos to cope with the mental & bodily pain after a phobia/anxiety trigger, was Claire Weekes' "Face -
Accept - Float - Let Time Pass" (The Floating Technique as Paul Foxman calls it in a great 13' talk on youtube). Despite that being specifically for anxiety, I think it can help us with the similar emotions, I use it for that and also for pain - Foxman uses childbirth preparation classes as an example how to 'float'. (I use "surf" together with "float", and Foxman uses that as an example too.) And like you say "it is part of the journey", and "this is my life": I think taking note and accepting our feelings with "radical acceptance" is the first step of pacifying the shame (about the shame) about the shame, the anxiety (about the anxiety) about the anxiety and the pain about the pain (not sure if there's a 3rd round there, whether physical or mental pain). It's only that that allows us to calm the root shame, anxiety, pain. And it's been my experience that pacifying the upper layers are the first baby steps of calming the root, because the same techniques (images, 'mantras' etc.) can be part of that work on it.
The word 'equation' is I think implying that the statement is trying to keep to "the facts", in this case the facts not including our emotions. Of course the emotions are fact, too. (For some, including emotions as fact may help, for others it may help to try to not include them.) This difference between a factual equation and one which includes emotions may be influenced by how much we interact socially. I do as much as I can, which is getting less and less, except online. And I know when I have to do with people from work, people in my family, in my partnership, (but not so much online?,) that there are not only feelings of disappointment from not being able to live up to expectations, but also a little shame, and it's hard to distinguish them. I think distinguishing them does help in pacifying shame, cos disappointment may be more understandable. Also when we interact more, there'll always be some people who actively cause these. I'm lucky that I only have very few who have sometimes done so. Others don't seem to find anyone that doesn't. That makes it a lot harder to live with any shame.
Then there's the question
Would you feel shame if you had diabetes? Or a heart condition or arthritis? I doubt it.
Well, I personally would actually feel considerably more shame, at least in the sense of it being embarrassing, if it were something that I believe would have to do with not having kept fit, not doing enough to stay/get healthy, and I think this would be worse for me with all these 3 than with fibro and MCAS. That's a bit cos I have the 'feeling' I (people) could do something about it. And fibro for me doesn't have that feeling at all, due to my positive social environment incl. all docs, but as we know and we've all said: that's rare.
And everything I have to do to cope with and improve my symptoms always need me overcoming embarrassment. That's a case where I actually do pretend embarrassment & shame are not part of the equation, sort of pretend "I don't care", cos it to a certain extent does help, but also to accept that I can't stop my thoughts from thinking about what others are probably thinking, altho I've got quite good at both accepting and ignoring those feelings/thoughts.
But you're right, if I weren't able to "radically accept" (as much as possible) and were in a worse environment, shame about fibro would be worse than those. And I think the message is that there are conditions that are more shame-ridden and some less, and that is partly a social issue (but also partly a personal one, like said).
