When it happens to you, your world falls apart. Maybe not completely, maybe only a little bit. But this is all there is now. It’s hard to focus on anything else. Nothing matters…. except surviving.
I’m sitting in front of a lovely man who’s giving me loads of information and telling me how it’s going to be. How I’m going to be. A nurse leans on the examination couch and smiles reassuringly at me. She seems to be saying “don’t worry, we’ll go through everything again”. I’m grateful for their kindness but struggling to process what I’ve heard. It’s complicated.
I go home, cry, fall apart and tell people whose help I know I will need. I read and investigate and do my google research. I realise this may not be what my doctor would like to hear, but it’s what we all do these days, sometimes despite ourselves. It’s hard to discern the sound information from the scaremongering and shocking stories I read. But it serves several purposes
- I know much more than I did before
- What I learn online supports the information I’ve been given
- I have a list of good questions to ask my doctor, and
- I recognise I can live with this – it’ll be ok, thousands of other people live with it, so can I.
Armed with all the information I’m good to go. I do all the right things – diet, drugs, exercise etc. And I go to my next appointment feeling more in control and positive. I ask my questions, we have a discussion. And finally – “Ok, so the multidisciplinary team will meet next week to talk about next steps and then we’ll let you know”.
It’s too late when I’m sitting in Costa in the foyer to ask the most important question. The one that I should have asked. “Can I come to that meeting please?” I’m angry with myself. What happened to ‘no decision about me without me’? Why didn’t I ask? I had to think long and hard about why. My conclusions were
- A fear of being told ‘no, it wouldn’t be appropriate for you to be there’
- That I didn’t want to put the doctor on the spot – it’s quite likely he’s never been asked this before
- My anxiety that I might not understand what they’re discussing and the jargon the NHS uses
- A fear that I’m kind of on the outside of this, that I’ll never really understand enough and that I’ll always be the patient.
And so, I’m angry that the disease is having such an impact on my life. It’s part of my life – not all of it – not my identity, not my reason for being. It’s just a part. Yes, a part that demands focus and attention – but still only a part. I decide that at my next appointment I will ask what the response to the question would have been had I asked it. Would he have been brave and said ‘yes, of course, if you’d like to’ or ‘let me think about it’.
It seems to me there’s a lot to be gained from allowing this to happen, to help people fully understand what’s happening to them and the benefits of taking some control of their condition in order to minimise its impact. And by that, I mean physically – because if you know how to do the right thing you can help yourself. But also, emotionally and mentally – to know you are doing all the right things and that you understand as much as you possibly can, has to be a positive thing.
It surely can’t be seen as threatening by clinical staff to allow and encourage people to be as involved as possible in their own care. And surely if it’s good for the individual, it’s good for those delivering the service. The benefits of helping me to help myself seem to me to be enormous.
Obviously if I’m self-reliant I’m in less need of you – the NHS and the whole team looking after me. That must help to cut costs as well as make me less resource intensive. If I’m self-reliant, I’m in control of this thing – it’s less in control of me. Yes, my life has changed and yes, I have to take care of this thing, but I can do this – with some help. And you know what – a positive attitude trumps everything. I’m not a patient – I refuse to be one. I’m just a person living with a challenge. I’ll give it nothing more than that…. with your help.
With grateful thanks to the team looking after me.