Being invisible can be lonely, isolating and frustrating. When there are no obvious demarcations to hint to the world that you are not functioning in full health, one can exist in an ‘in-between’ state where concessions and help are required, but rarely offered; and adjusting ones expectations of themselves, as well as the expectations of others, is an exhausting and disappointing reality.
However, ‘coming out’ as ‘other’ can also be a challenge. It requires one to advocate for her own needs, when she may not fully accept the limitations of her condition. And the prospect of placing what is, for many, a highly personal and private struggle into the public domain is daunting, to say the least. The level of vulnerability and openness required, mixed with a fear of the opinions of others, can seem worse than invisibility.
These illnesses can also leave a large gap between what is seen by others and what is known by the sufferer. This gap is easily filled by self-doubt, shame and guilt. Are we enough as we are? Will others think less of us if they know we are ill? Can we be loved and desired while also being unwell? How much of our condition do we accept? How much do we try to fight? In acceptance, is there room for hope? In acceptance, is there room for recovery?
(From Jessica Cohen, ‘To Be Seen or Not to Be Seen: Coming Out as Unwell,’ in Heather Taylor Johnson (ed.), Shaping the Fractured Self: Poetry of Chronic Illness and Pain, UWA Publishing: Crawley, Western Australia, 2017, p. 42)
oh, yes---this is all so true! she says it very well.
ReplyDeleteShe does indeed. :)
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