Now Booking for May 2024 Foundations of Patient (Lived Experience) Leadership Programme
Learn more & book

Is It Worth It?

by David Gilbert

August 21, 2016

“With all the will in the world 
Diving for dear life
When we could be diving for pearls”
Elvis Costello

___

This morning, I noticed the trees. And a lot of other things – the wind, the rain, the clouds, my feet, my spine. I am fortunate. I have come through, for the time being, a period of extreme anxiety and OCD-type thinking. I am grateful.

As some know, I have suffered work-related stress and been off work. I think I am coming through, but am still fragile. I am on meds for the first time in 30 years, and I think they are helping. I am also helping myself – I suppose one could call it ‘self-management’. But at times, it has been more just about survival. I am grateful.

My wife, Susan has been extraordinary, and yet again I have been amazed by her cool head and warm heart. And her patience. We met in a psychiatric unit as fellow inmates, almost exactly 25 years ago. We’ve had our rough times, but have stood by each other. Love has grown in weird and wonderful ways. As it does sometimes.

This week, while she has been away with my youngest son, Adam, I have had a week with the older boy, Samuel. He is a teen who loves computer games, but this week, I have lured him away from the screens every now and again. We have gone shopping together, had meals out, cleaned the house and sat in the garden watching the cat. It has been lovely. A wonderful side effect of my illness.

I have found time to write poetry. I have again discovered that words are my real love. If I could make a living from poetry, I would. But I know that is unrealistic. Unless any of you have ideas on that score? 🙂

Meanwhile, friends have offered incredible acceptance, love and support. I have even had emails from relative strangers, many of whom have said they appreciate the work I have done over the years. I have been thrust back into a vulnerability and need for love that I have not felt for years.

And in some strange way, I think I have been nicer in the last few weeks. I am again aware of how people are not really their physical selves, but a mass of whirling sensations, thoughts and feelings – just like me.

I have, for the first time in years, allowed myself to rest, and have needed to allow myself to heal. I let myself lie on the sofa and watched the Olympics. I have been touched particularly by Lutalo Muhammed, the silver medalist in the taekwondo, who lost after being kicked in the head in the last second of the final. I am always intrigued as to how people cope with ‘failure’. It feels familiar.

Is It Worth It?

I have been doing too much as a Patient Director. My portfolio has seemed too large, and I should have asked for more support earlier. Or maybe I am not made to be a director. I have been pondering whether the stress is worth it.

When I go back, it will be a ‘phased’ return, negotiated with people I trust in the organisation (who have been tremendously supportive by the way!). I have not been able to focus on areas of strength and been drawn into situations that have been uncomfortable. This needs to change.

Beyond my own troubles, over the years, I have watched fellow ‘patient leaders’, or whatever we want to call us/them struggle to balance their passion for the cause with looking after themselves. Too many ‘relapse’ for a host of different reasons. And now I am one of them.

Our efforts will fail unless we find ways to support ourselves and each other – I am venturing out tomorrow to have tentative discussions with a few amazing friends who may help build ways to do this.

I have seen how much my body and mind need to heal. For too many years, I have been keeping myself going and been a ‘skater on thin ice’ as a therapist once phrased it. I am full of anxieties that are easily triggered. Ventures I have helped build have crumbled, and I have resurrected my career more times than I like to think about. I am also quite strong at some level, confident of my abilities (when my brain works) and pretty good at what I do. How will this work out?

I need to earn a living. I can’t afford to resign. I want to make the Patient Director role work. And I know there is deep learning to be gleaned whatever happens. But if the work takes its toll again, I will walk. And trust the universe, if I can. That is my pledge to myself.

And that is why I have written this blog. This is for me. I want to look back in six months or a year and know that I have put my body and mind first for a change. And my family. I cannot afford to go through this again.

If this blog speaks to you, that is an additional gift. Please look after yourself. Be gentle.

All blog posts
what we do

One comment on “Is It Worth It?”

  1. ".I have been doing too much as a Patient Director. My portfolio is too large, and I have not had sufficient support. Or maybe I am not made to be a director. I have been pondering whether the stress is worth it.

    When I go back, it will be a ‘phased’ return, negotiated with people I trust in the organisation (who have been tremendously supportive by the way!). I have not been able to focus on areas of strength and been drawn into situations that have been uncomfortable. This needs to change."
    Gives clear route for the journey. Gently and safely, flagging deficits and capacity. No journey alone. Well done for resting. Always prepared to offer a response. Compassionate Communities are in short supply.

Leave a Reply to Doepublic Cancel reply

Your email address will not be published. Required fields are marked *

patient leadership newsletter

Sign up to our Patient Leadership Newsletter and get a free eBook

When you sign up to the quarterly Patient Leadership Newsletter you will receive a free download of The Rise of Patient Leadership, an eBook collection of David Gilbert's most popular articles.

Get a free eBook of David Gilbert's most popular articles

Subscription Form (#8)

crosschevron-down