
This is the second of three blogs by one of our supporters Dr Jenny Ceolta Smith. In part 2 she reflects on the personal value, benefits, and rewards of advocacy and the drawbacks I have experienced.
Drawing by @ColinGBarrow taken from the Royal College of Occupational Therapists’ OT News piece in 2021: Riding the waves of Long Covid together as occupational therapist peers (9:18-21). Ceolta-Smith, J. Stanley, K. Maloney, L. Witcomb, L and Cohen, L
The personal value, benefits, and rewards of being involved in advocacy
“There have been, and still are the ‘dark days’ while suffering with Long Covid, so advocacy has and does give me meaning and benefits.”
Three of these benefits are outlined here:
- I’ve connected with many kind people while advocating which has provided peer support and new close friendships. These new friendships are invaluable given the loss of some friends I had before I became ill.
- I have learnt so much from people who have energy limiting conditions which includes people with myalgic encephalomyelitis /chronic fatigue syndrome who have a wealth of knowledge and expertise. Much of my Long Covid advocacy has been framed by their work, for example, the work of Catherine Hale and Chronic Illness Inclusion.
- My advocacy has kept me up to date for example, with Long Covid research and provided evidence for the continuing professional development requirements with the Health and Care Professions Council. (HCPC) But to be clear as of the 1st September 2024 I am a retired occupational therapist and deregistered from the HCPC.
Advocacy activities may have value for some people with Long Covid when preparing to return to work for example, in refamiliarizing and testing out work-related type activities as well as gaining new skills and confidence. I have heard many people with Long Covid report this too but taking caution and finding the right balance with advocacy commitments when returning to work and being in work is probably wise. I also see potential value in my advocating for updating my CV for future job prospects if I can return to some paid work. I spoke about some of these points in a podcast here to Jackie Baxter: Long Covid Podcast: 27 – Dr Jenny Ceolta-Smith: The Aftermath of Leaving Work
Advocating has brought me opportunities to take part in patient advisory roles in research, for example with the LOCOMOTION NHIR study element focused on vocational rehabilitation too. I hope to blog about these opportunities next. But in my experience advocacy has at times negatively impacted on my health and wellbeing.
Watch out for any high waves and beware of the hidden costs of advocacy
“One day I woke up and realised my Gmail account resembled my old work inbox rather than my personal email that I needed to order my weekly food shop.”
Many of us within the Long Covid community dived into advocacy with no training, coaching, or mentoring. Back in 2020 I never considered I’d be advocating longer-term. As the years have gone by there have been times when I’ve felt the pressures and stress of advocacy. People who are well including some of our allies can overestimate our capabilities and capacity for tasks too. They can also forget that we are ill. In my experience it can be hard to ask for accommodations while advocating and I want to raise awareness of that.
It has taken a while for me to be honest about the harms to my health when advocating for example, it has caused post exertional symptom exacerbation. I have compromised on self-care activities and especially recuperative rest. I know I’m not alone in having made sacrifices to undertaking my activities of daily living for Long Covid advocacy. Without the ongoing kind support of my husband, it would not have been possible for me to do the things I have done as an advocate. However, there may be consequences to our relationships in not being able to spend quality time with our significant others while advocating. So, I often use an email out of office line: “I am in need of a rest break”, but it can be hard to stick to.
All too often we don’t have enough or any support with the tasks we carry out. One example that helped me was having a proof-reader for a written piece of work that a peer kindly paid for. There is also the “payback” on completing a task. This is something I forget to plan for, despite knowing that intensive written tasks can lead me to “crash” sometime afterwards.
Taking time to step out of ‘the advocacy pool’ to pause feels important. For example, to review how we communicate because there are many and varied formats being used simultaneously across the Long Covid communities. This may not always be a smart way for us to advocate while ill, e.g. emails, (& reply to all emails) google drive, What’s App groups, texts, phone calls, Face Book, Slack groups, X Twitter DM groups, Jam boards… and updating websites… the list goes on, as can the negative impacts on our health.
So, we must never underestimate the effort and energy people with Long Covid so generously give to advocacy and its clear why funding is needed. In addition, acknowledging peoples’ contributions is important, but unfortunately, this doesn’t always happen.
Be aware of skinny dipping and feeling exposed after going public
So many of us use social media and media to reveal sensitive information about ourselves and our lived experiences of Long Covid because we are disbelieved and disregarded. The significant failures of governments, public health bodies around the world have meant we have had to do much of the heavy lifting in shouting from the roof tops about the lived reality of our illness. I am always so grateful when my peers go public.
I decided to go public early on, but there have been times when I have not felt so comfortable afterwards especially on X Twitter and it is not always possible to redact things. This is another example of where peer support and debriefing after taking part in such activities can be valuable. Two examples of being in the media with my peers in health are here: ITV Northwest Don’t let treatment be a postcode lottery’ urge Northwest Long Covid patients March 2021 by Lise McNally ITV Northwest Should Long Covid be recognised as a disability? August 2021 Lise Mc Nally
I‘ve also felt a sense of moral duty as an occupational therapist during this period to inform my professional body and peers about our lived experiences especially in the challenges to access effective health services e.g. Long Covid clinics, and the harms to our health in claiming benefits. More recently I wrote an Open Letter to the Royal College of Occupational Therapists about this. Read about the positive outcome of this letter in part 3.
Advocacy tasks can be demanding and may impact on others
We must be mindful that many advocates have families, caring responsibilities and, or may be working full/part time too. So, we need to find better ways to share the load, delegate tasks and build in ongoing flexibility to ensure we are not putting each other under any pressures individually or as a group. Our health should come first, but it’s too easy to override this need, for example, if a task has been agreed by a group but then only one person has the capacity to complete it.
I have learnt to accept that peoples’ advocacy commitments may need to be dropped, and people may no longer want to do a task. In addition, our passions and focus for change may not be the same priority as our peers, so we must be mindful of unintentionally drawing people into projects that they do not really want to do or can sustain.
There are the natural tensions of working in groups too which we all need to manage and resolve. It’s important to highlight that there are unhelpful past work behaviours that may creep into advocacy and there is a need to find ways to manage this. This may be challenging while ill and any unnecessarily stress associated with advocacy is not a good thing. So, this is where having advocacy training and or a coach with options for debriefs may be of value. Having outlined some of the challenges, I’m thankful that in my experience, that there have been far more ups than downs to advocacy. In part 3 I focus on keeping as well as possible while advocating.
Find me when I’m there at: X formerly Twitter: @JCeoltaSmith and @WorkingWithLC @jceoltasmith.bsky.social
Acknowledgements and thanks to:
My advocacy peer and friend Dr Clare Rayner for reviewing an earlier draft of this blog.
Colin Barrow for his drawing.