I'm fortunate enough to have some supportive family and friends but I can't discuss my condition with any of them, mainly because they don't understand PMR or it's real impact on my life. What they see is not the reality of the situation. They don't see the frustrations, the failures, the disappointments. I understand what you're saying.
I feel I am among friends on here - even though we are united by something we'd rather not have. I think I remember Kendrew wrote a lovely post quite a while ago about the benefits of this support forum but I can't find it now, when I do I'll post a link as it was so well written and inspired me.
Apologies, I think have confused it with this written by Marilyn1959 that I'd copied and pasted and saved that way:
Why forums like HU are so useful – post on HU
I am sitting here this evening watching 'I'm a celebrity get me out here', marvelling at how quickly a group of strangers become reliant on one another and unite when placed in unfamiliar, challenging circumstances. Supporting each other through the peaks and troughs, congratulating, commiserating, working as a team but responsive to the individual. Ring any bells for you?
It certainly did for me as my thoughts immediately then turned to THIS community, a group of strangers, thrust together not by choice but due to diagnosis of a shared disease in a jungle full of nasty surprises, where sometimes you can't see the wood for the trees and snakes can bite you on the bum when you least expect them to.
I then thought of the considerable and far reaching gains I have had from belonging to this community. Here's my list, in no particular order, of positive outcomes your support has enabled for me.
a) Growing knowledge and confidence to question, challenge and contribute to the decision making about my treatment regimes
b) The tools to track my progress against the experience of others and question why when I am going off track, leading me to find a solution to get back on track.
c) The ability to analyse, reflect and confidence to adjust regimes to accommodate my changing needs
d) The immediacy of reassurance when panic sets in with no GP or Rheumy appointment in sight
e) Positivity and Laughter
f) A sense of belonging - Sharing experiences with like minded people who speak and understand my language and can therefore empathise.
e) By contributing to posts feel that I am able to give something back, hopefully adding value to the 'whole'
I wonder what the key benefits have been for you since joining this community?
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