on not being a threat (revised)

I felt very comfortable waving a placard. I’ve done it many times over the years, but never in such a warm, dry place. A hotel conference room, with sausages and mini quiche to follow. I was inside, talking to the system rather than outside, shouting at it.


I seem to have spent the last few weeks talking to slightly different healthcare audiences. I’m glad to do that because it makes connections, it gets our stories heard, it takes rare disease and patient ’empowerment’ out of a strategy document and puts them front and centre. It’s something I can do.

I’m done now, though; body and brain both weary and in need of rest. If only it wasn’t for that pesky niggle.

Safe. Token. Cosy. Soft.

A gal could have her head turned at these events, what with all the gushing that goes on, with all the people who suddenly see a possible solution to their patient problem. Could you…? Would you be interested in…? Would you like to…?

‘If only we could have 100 of you’, said a well meaning chap, somewhat missing the point. There are many, many, patients and carers doing exactly what I do. They take time away from their families and try to influence. They try to get their voices heard, their opinions shared. They are volunteering for charities and participating in Public and Personal Involvement groups, just like me. And, somehow, the system doesn’t see us all yet.

This week some of the system saw me. Relaxed and chatty with 60 odd insiders. I too was inside. I looked like a useful being.

What they didn’t see was the experience, the tears and heartache. They didn’t see the anger and waste and loss. I didn’t share my clichéd ‘journey’. I wasn’t talking about the hours of learning to work in partnership, the online and real life courses, the mentoring, the relationship building. The sheer effort and frustration of learning to be effective was hidden. The investment by me (and in me) and others, patients, carers, committed public servants and fellow volunteers wasn’t apparent to them. I fell into their line of vision without apparent history or support and that looked easy.

It’s not. Any long term readers will know something of the chaos in my world and my head as I’ve tried to process being an unemployed, unhealthy, orphan. I don’t have the day to day demands that many colleagues have- my family are healthy and I’m not run ragged going to hospital appointments. I’ve been able to put time and energy into learning how to influence. Two minutes on ‘why I have a placard’ could never tell the whole story.

I’ve been talking and talking about the need to get patient voices heard, listened to and valued. That means all the patients. That means providing support- from respite and transport to coaching, shadowing, mentoring, as desired. There are no easy ways out.

Do the work; demonstrate the value.

One white haired, smiley woman cannot, will not, and should not fill each gap where patients should be.



5 thoughts on “on not being a threat (revised)

  1. I so agree with you. I think some people are put off getting active because they fear they will be pulled in to too much, they don’t really know they can refuse. I have heard so much of what you have done, and it happens because you accept your limits, recharge and do… what you can… not what other people imagine you might! [speaking as one who has become an expert in saying no, and only doing what I feel up to]

  2. With you all the way Fiona, if only I could stand upright long enough. Two events in two weeks have left me bed bound again and even more frustrated.
    Saying that, the pesky niggle we share will keep me motivated to fight another day and in the meantime I’m fighting the cause horizontally by the usual bombardment of emails to the ‘right’ people!
    Thank you for all you do.

  3. I really value your perspective, Fiona. You’ve been open with your struggles so that my first instinct is to simply applaud you for the progress you’ve made to get to the point where you are capable of inspiring an audience to want even more from you! That is amazing personal movement, but it is easy to forget what that costs you, or any advocate. I certainly don’t want your investment in others to drain and exhaust you. I do hope that you are aware, however, of how easy it is for others to be impressed by you. You’ve worked so hard and have such a strong, clear voice! ox

  4. Thank you for sharing your perspective, and for your rare disease support. I’m with you. I feel an obligation to advocate and educate on behalf of our rare son. Hunter is three with Spinal Muscular Atrophy Type 1. I’m following your blog, and on twitter. I look forward to reading your new posts, and perusing your older posts. Cheers!

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