A Conversation in Response to ‘Living with Illness’

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.

Hi Andy,

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
forgiveness ..yes
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.
Elly

 

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.

 

 I manged to unintentionally upset another very lovely person, who told me about it on Facebook – here is part of my reply to her:
I was trying (and it seems unsuccessfully) in a shorter than usual blog to say 2 things, and I definitely didn’t unpack either well enough. However, I am hugely grateful for the chance for a conversation about it. I firmly believe we are changed as we encounter each other, and am therefore really grateful for your challenge and perspective. Gone are the days when doctors can utter edicts and always believe themselves to be right. On one level, I am trying to challenge the dehumanisation that is dealt to those, like you, who suffer with a long term, debilitating illness or disability. So much of the ‘system’ in terms of benefits, etc can (not always) dehumanise the people living with the conditions by labelling in an unhelpful way. So, I think there is a difference between calling Andy a diabetic, compared to Andy, who has diabetes or saying Janet is disabled rather than talking to Janet, who lives with a disability…..maybe I’m wrong…..
I am really hoping that we can find less dehumanising ways of talking about people who are disabled in some way…….language can be so clumsy.
 
Secondly, and this is where I was way too simplistic for which I do apologise, I was looking to speak hope rather than idealism for those who live with chronic ill health. I genuinely do touch on the deep pain and complexity of my patients lives every day and I know that the issue is not straight forward. My hope was to gently encourage without being idealistic that ones identity, although surely affected by chronic ill health, does not have to be defined by it. I have patients with debilitating MS, Parkinson’s, MND, Bipolar, schizophrenia and COPD who see their illness as part of them and they have had to courageously accept how utterly life limiting it is…..they struggle, they are breathless, they feel terrible pain, they hate, they feel hopeless at times and yet still they say that it is only a part of them – a huge part, that shapes every move they make, but isn’t the fullness of who they are. I could have said that much better…….did I improve or am I still missing it? 
 
Elly – I love what you wrote about being healthy. Doing those amazing things you do, like eating when you can, exercising in the ways you are able, being grateful, forgiving others, caring for others and appreciating the beauty around you, to me that says that although your body is suffering and tired, inwardly, you are well…..and if you weren’t there would be no judgement, only understanding (at some level) but maybe also a little offer of hope and encouragement that though the tunnel is long and dark, there would be people to walk through it with you……
Thank for your lovely encouragement to me also – I am hugely glad that you wrote to me and for the challenges you brought.
Andy

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