To say I’m not affected by the image of myself as chronically ill or disabled would be untrue. But in reality its the fact of it which I really resent. What people think or how I’m judged can be a shallow annoyance. But a powerful thing. I feel written off. I become someone either to help or avoid. Not someone to reach out to. And I too don’t feel able to reach out either. At various times of life, I have been embarrassed, guilt ridden, terrified, hopeless, helpless, useless….valueless and in the way. But mostly felt burned.
Being true to yourself : a must have I think if you want to survive the gruelling days of chronic disease management (sometimes called life), there’s not much wiggle room and it requires overcoming societies expectations, family and friends, but more importantly your own.
so what to do… I have diseased lungs so it takes forever (well 5/6 mins) to recover enough breath from getting in somewhere, like a shop or a café, or a hospital, to be able to speak. This is a very difficult part for people able to walk in and get on with buying, looking, talking straight away. A mighty big thank you to everyone for even trying.
I’m really trying to rediscover what are my preferences and passions, after the years of overcoming the deep depression, and long cycle of allopathic treatments and culture which follows a diagnosis, so that when I can voice my needs, they have a chance of being met, rather than just politely , and gratefully taking what’s offered.
When so much of your life relies on others for basic needs, its easy to forget what only you can offer yourself.