After my last blog post, I got a couple of responses from people who felt I misrepresented them. I am always happy when people come back to me in discussion. We are never changed if we cannot receive challenge or we do not really encounter ‘the other’. So here is a conversation between me and a lovely person called Elly who helped me think more deeply about the complex issues of living with illness.
I’ve been introduced to your blog via Martin Scott’s, a dear friend. Interesting timing in that my daughter (in New York) and myself in the uk are both seeing consultants today looking at our multiple autoimmune diseases plus some possible new ones! We also have a group of friends praying today, as our health puts limitations on us. So here’s the thing, I read “living with” and then “are you healthy?” and got very angry….. don’t go away…. chronic illness is real, debilitating and often life threatening.. you know that. We would love to be able to function without them, sometimes it’s not possible and sometimes can mean often.
You suggest that health professionals and I would add government and well meaning charities label us disabled. I use the term disabled to get financial aid, practical help and to explain what it’s like because chronic illness doesn’t cut it for most people (they think it’s all in you head) another label. NHS and benefits don’t relate to it either. I was challenged by my use of the word and would like a creative way to describe my life (ever read the spoon theory?) My friends have been really positive with this site. Back to my anger… Maybe at myself for using the D word but also because I feel by putting us in 2 catergories you too have labelled us. We’re neither a or b (ok I know some are) but I am me, but with those limits… I’m my head I dream and sometimes wish I didn’t because trying to act on those dreams however small can bring on a crisis. I divert.. May I suggest that you too find a new way to address us?
are you healthy?
eating ..when we’re not nauseaous
exercising… limited due to poor mobility and pain
gratefulness… yes I am
care of others ….finding small creative ways to do this
nature would love to be out there too but grateful to hear the birds,watch the sky change
Now you may have not directed this at us but it felt like it so to try to deal with nasty feelings of mr anger I carried on listening to the amazing story of the 5th monk. (See reimagining health post). First you told it Soooo well, my attention was caught and I was totally engaged and with all that you shared. I think we will be hearing a lot more from you, you have a gift that will draw people to listen. What you say will be important (so maybe I had to get mad so I had to write to say all that (not from me).
If you want to use anything that I’ve written or you may want to delete feel free. Its been a long read admittedly or you may have given up! So bless you, continue on this journey and may others join. Use any of my stuff to encourage conversation. I’m going to get my gp reading this.
Wow – Elly – thank you so much for taking the time to write all of that. You are absolutely right and in my effort to write a shorter blog in which to engage people, I oversimplified it in a very unhelpful way. I was short sighted in how I communicated and probably pretty patronising as well – so for all of that I am really sorry. I guess we are only really changed as we encounter ‘the other’ and so I am hugely grateful that you took the time to tell me what it’s really like for you – it changes me.