I happened on an article from a national eating disorder organization website in the US, offering guidelines for those suffering on how to responsibly tell their story. It had some advice around avoiding triggering language etc. which was all very practical - with the underlying message being one must not share information in a manner that might rob other sufferers of hope.
In the blog universe - one doesn't think a lot about the "rules" - even though I try to be mindful not to inadvertently suggest that because my story may not have the happiest of endings - others should aspire to this same fate or determine all hope is lost. Despite the prevalence of these conditions, many people have and will recover from eating disorders and will find a way to rebuild their lives without this heavy burden. Through the strength of their own will, with the right supports at the right time - they can and do prevail.
But my story is just that - a collection of thoughts and musings that only reflect my experience - not as a proxy for an entire community of people who share elements of the battles I failed to conquer. For me, it is more important to say that this is not the sum of my life or who I am. For me it was the hiding, the shame, the debilitating toll of my secrets that in some respects took a greater toll than the illness itself. It kept me separated from many people and experiences that are only becoming real in this time. Yes I am a reminder of the physical consequences of this condition - that a reckoning can and will come - and yet even with all of it - the shock, the pain, the sorrow - there is an opportunity for something greater - something deeper that I am still discovering - what and who is valuable in my life - what needs to be saved and what I can let go of - that little dreams are just as real as big ones - that there is freedom in thinking about now, without the sheer weight of fast forwarding every moment into a future that has its own designs - the tyranny of control and perfection recognized for what it is.
Whether or not I followed the "rules" I needed to tell it...until the story ends.
seems intriguing to me to impose guidelines on how to tell the story of a disease that by its very nature is made up of a rigid set of self-imposed rules. rules surrounded by shame and secrecy.
ReplyDeleteto me, letting go of the shame and secrecy of the disease through the sharing of your story illustrates the power of the human spirit and its capacity to change and grow - the very essence of hope.
Wise words as always from the lovely Laura Stovel....xo
DeleteI understand the concerns around this and several other topics. But my experience in the media has been that the result has too often been silence, which has done more damage than occasionally ill-considered reports or comments.
ReplyDeleteI would whole heartedly concur, Paul - it is the silence that kills...
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