From diagnostic odyssey to involvement odyssey – an emotional journey

Centre co-producer Lynn shares her long and emotional journey to diagnosis and talks about co-production and involvement, how she got involved, and how being involved has turned out to be another very emotional journey.

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel”. Maya Angelou

I always try to hold this sentiment close in everything that I do but acknowledge that it can be challenging, I know that my words and actions have caused upset in the past.

For the past few months on wakening I check my emotional temperature and wonder what my emotional bandwidth will be that day. I suspect I am not alone COVID-19, lockdown and shielding has been an emotional rollercoaster ride for many.

I have always been an emotional person. This quote sums me up:

“My mind is like a seed packet of assorted wildflowers – I get happiness and sadness and whatever else pops up”. Terri Guillemets

My life changed just over 7 years ago when I became unwell and started a 4 year diagnostic odyssey, the time it took to be diagnosed with a rare, auto immune, Rheumatic disease. I emailed doctors and researchers, travelled all over the UK, asked questions, pushed for answers and refused to give up. That odyssey was filled with emotions, from anger and despair at being told my symptoms were psychosomatic, to hope that one of the multiple doctors I consulted would give me a diagnosis allowing me to provide it as gratitude to my family for being on the journey with me. Eventually I managed to get a diagnosis, effective treatment and came to terms with what had happened. This prompted my interest in medical research and involvement. I used all the research I could access to help my odyssey, much of it was behind paywalls or written in medical language that was difficult to understand. I started to think about what was important to me as someone living with a chronic disease; often research didn’t reflect those priorities. I didn’t want anyone else to have my experiences – delayed diagnosis led to me losing my job and having to give up my driving licence. No one wants research to succeed more than the people living with medical conditions. It made sense to me that involving people, and their unique insight, could help.

So began my second odyssey, my involvement one, which has been strikingly similar in terms of travelling, emailing, advocating for involvement and refusing to give up. I smile when I hear researchers say they can’t find anyone to be involved – I was there, jumping up and down yelling “involve me“ in to the void. It took a lot of hard work and effort, emotional and practical for me to be in the position I am in today, involved with many different groups and starting to learn more about co-production.

When I reflect on my odysseys it’s the emotions that stand out. The joy of a consultation with a health care professional who understood and wanted to help. The high of being involved in a research grant application where Patient and Public Involvement has changed the primary outcome to one of relevance to patients and not limited our involvement to commenting on the plain English summary. The feeling of self-worth, that I still have something to contribute despite being forced to retire aged 50. The happiness that the people I have met on my involvement odyssey have become friends, the gratitude for the experiences and skills I have learnt along the way. There is no high like the involvement high, when everything comes together and people collaborate to ensure the research meets everyone’s needs.

When I started to think about writing this blog I reflected that involvement and co-production mirrors published research, overwhelmingly we hear about the positive outcomes. Much research is never reported, yet can we not learn as much from the things that haven’t gone so well as those that were successful? Why is the system reluctant to acknowledge the learning potential from failures? Are we comfortable with acknowledging that all forms of involvement can have both positive and negative impacts on those involved, particularly public contributors? I think that the issues of unequal power and agency that lie at the heart of medical research and service design often go unchallenged. Instead, individuals often take the blame for being negative, having an agenda, or being too disruptive. I think that we need to acknowledge that there is emotional harm that can be associated with co-production and involvement.

David Gilbert recently wrote what I called a “blistering “blog on emotional labour – ‘I can’t stand up for falling down’.

It’s not just me asking these questions, I have been having these conversations with friends interested in involvement, Savia, Jordan, Joyce and Jane, who have provided me with wise counsel and support when it all feels too much.

Increasingly though I feel as if I am approaching a crossroads. Despite developing the hide of a rhino and trying desperately not to ‘sweat the small stuff’, I am questioning whether my involvement efforts are worth it. Do the many emotional highs compensate for the crushing lows? I can’t get involved unless someone chooses to involve me, I don’t always have control over the terms of my involvement and sometimes the time and effort I invest is barely acknowledged. It’s on ongoing debate I have with myself but involvement MATTERS so much it’s difficult to walk away from it completely.

It’s also an ongoing debate I have had with different people on platforms such as Twitter. On there I have found a community of others and have accessed some wonderful opportunities. I need to recognise that as well as the positive of seeing my experiences reflected by others the limited ability to express complexity, tone of voice and lack of nuance can lead to emotional harm. Questions and frustrations at systemic issues can be read by people in different ways, there is a risk of meanings and intentions being confused. We are involved because of our lived experience, the nature of that, including the emotional labour, means that the process of involvement can be underpinned by passion and emotion. We deal with this in different ways, I know I can be very direct. Does this create unintentional clashes, even amongst those who are working towards the same goal? I hope not, but I imagine it might.

If I am to continue my Involvement and co-production odyssey I need to take this advice:

“Feelings are much like waves, we can’t stop them from coming but we can choose which one to surf”. Jonatan Mårtensson

How can we translate both positive and negative emotional experiences into learning to improve all co-production and involvement? How do we ensure that everyone’s voice is not only heard but listened to? I realise that this is written from my biased perspective about the way I feel, what I would really like to do is to kick start conversation and debate about the emotional aspects of co-production and involvement to hear about how others feel. It’s challenging to remain unemotional and so completely balanced, when this is fundamentally about personal emotions, but I want to try and concentrate on critiquing and fixing the system and hope others would like to join me!

If you would like to chat more about this you can find me on Twitter @Lynn_Laidlaw or email coproduction@ucl.ac.uk and the team will put you in touch with me.

Thank you for listening.

Lynn

 

Get Involved with The Centre for Co-production

Ready to start your own co-production journey? Join us at one of our upcoming sessions as we get closer and closer to our official launch event in October 2020. It’s a very exciting time to take part in the Centre’s work, whether you have had any experience in co-production or none at all. You can check out our blogs about previous sessions to get a glimpse into what they usually look like.

If you would like to join or if have any questions, email us at coproduction@ucl.ac.uk

You can also find us on Twitter at UCL_CoPro