At the age of 22, I took a leap into the unknown when I became a trustee of the charity Fibromyalgia Action UK. The decision was inspired by my desire to make life better for people with fibromyalgia, but simultaneously, I found myself doubting my capability as a trustee – particularly a young trustee, and what skills I would bring to the table.

What does it mean to be a trustee?

Trustees are the people in charge of a charity; they’re sometimes referred to as the ‘Board’ (which always sounds too much like Dragon’s Den or The Apprentice!) According to the Charities Aid Foundation, trustees help to make the UK the sixth most giving country in the world. Trustees play a vital role, volunteering their time and working together to make important decisions about the work of a charity; which is why Trustees’ Week is an annual event to showcase the great work that trustees do and highlight opportunities for people from all walks of life to get involved and make a difference.

How many trustees are there in the UK?

There are around 196,000 charities in the UK (167,000 charities in England and Wales, 24,000 in Scotland, 5,000 registered in Northern Ireland). In terms of the number of charity trustees, there are just over 1 million (of which some 850,000 are in England and Wales, 180,000 in Scotland and 30,000 in Northern Ireland). Previous research conducted by the NCVO and CCNI has shown that just under half the UK’s trustees are women, with the average trustee in England and Wales aged 59 years old, and 55 in Northern Ireland. Importantly, there are also many young trustees too with some 86,000 trustee positions held by people aged 16 to 34 years old.

So what made me want to become a trustee?

As I’ve previously alluded to, I wanted to be able to use my personal, lived experience to help make a difference to the lives of others. Fibromyalgia is a long-term condition characterised by widespread pain and profound fatigue, among a very long list of other symptoms, including unrefreshing sleep, headaches, irritable bowel syndrome, cognitive disturbances, dizziness and sensitivity to environmental factors. It really is a horrible condition. Having been diagnosed with the condition when I was 18, I didn’t really have many opportunities to speak to other young people with the condition. The condition also tends to affect more women than men, so I didn’t really see much out there to support men. I felt there was something I could do to help change this, but didn’t necessarily know how best to do that. What I did know was that I wanted to use my experience in a positive way to help others.

Becoming a trustee of Fibromyalgia Action UK

I subsequently came across Fibromyalgia Action UK, the UK’s national charity for fibromyalgia. I saw they were looking for new trustees to join their team, so in true Simon ‘yes’ style, I dropped them a line, and was put into contact with one of their trustees, who coincidentally lived down the road from me! She invited me to her home to discuss the role further, and offered invaluable insights and advice about the charity, with her involvement extending across several decades.
I came away from the meeting feeling inspired, excited and ready to try something new… but at the same time, had feelings of uncertainty, ‘doing the wrong thing’, and questioning my ability to be a trustee… based on the assumption that I was too young to be able to be in a management position of a charity… which of course is not true!
I did question my capability to be a trustee… based on the assumption that I was too young to be skilled enough to support the management of a national charity.”
All of this happened just after I had finished my undergraduate degree at The University of Manchester – in the months I had off before starting my PhD at the University of Leeds in October 2016. In the weeks that followed, I spoke to the rest of the trustees via telephone, and joined half of the annual face-to-face board meeting at head office in Paisley, in July 2016. This was an opportunity for observation – to meet people, to get to know them, to see more about what the charity does, and to reflect. At the meeting, I was voted in as a trustee, and signed the necessary paperwork to go to the Charity Commission. A few days later, I graduated from University, and then went on holiday for a week – getting away from everything after what had been a really tough year as I raced through the home straight of my degree! I returned home, after a fab week cruising around the Med, to see that I’d been given a charity email address – so I logged in, and then logged straight back out! There were hundreds and hundreds of emails… and I just panicked! It’s important to remember not to place too much responsibility on your shoulders, especially during those early days, when you’re finding your feet – and that’s something I wish I could have told myself back then. Things can be a little overwhelming at first – but that’s okay! It’s a natural part of settling into something new.

Over the last two years

I’m always very conscious about treading carefully when starting a new position – there’s nothing worse than entering something new, trying to change the way that everything is done, and then angering and putting people off you – it never works. This is always something I’m conscious of, and would never want to do. I believe the best way you can influence change is by getting to know people, by providing ideas, thoughts and items for discussion, and then suggesting potential solutions to see that through. When you’re working with a charity, particularly a small charity, team work and collaboration is key – and you’ve always got to remember that, even when people may do things in a way which you don’t necessarily agree with. Over the following months, I was able to harness my skills and experiences in social media to begin to evolve communications from the charity to the outside world. I also began to use my skills as a researcher to improve the way in which the charity supported researchers and other organisations… all of which is still an evolving process, but something which I very much enjoy. I want to do so much more, and have a very long list of things to implement and explore, but these things take time – and that is something which I, and all of the other trustees, are short of, because everything we do is in our spare time, alongside our other jobs, commitments and health – because we all are also dealing with fibromyalgia (as well as many other conditions as well!)

Becoming a trustee of a second charity, RAiISE

I’m still struggling to say ‘no’ – and I don’t think I’ll ever change! Living with chronic ill health, you do have to learn to ‘pace’ yourself, something which I still don’t do very well! However, you really cannot contain heartfelt passion to make a difference… and so when the opportunity arose to become a trustee of RAiISE, I had to say yes… people have called me stupid, but as I often say jokingly, “you’re a long time dead“, so I might as well give my all while I can! RAIISE Logo I first became involved with RAiISE (which stands for Raising Awareness of Invisible Illnesses in Schools and Education) after meeting Sophie Ainsworth and her mum, Sammy, at another meeting for a project we were both patient/parent advisors on. We subsequently spent a week together at the 2nd iCAN Research and Advocacy Summit in Barcelona, where we spoke more about RAiISE, which Sophie had founded, and where it could go in the future. I related so much to RAiSIE and Sophie’s experiences of not being understood as a young person with invisible illnesses at school, and so I already had invested in her idea. Fast forward nearly two years, and Sophie asked me to join the RAiISE Committee, with the aim of raising awareness of invisible illnesses, and beginning to work on packs to deliver into schools to better inform staff about how to support young people at school. This has led to us applying for registered charity status, which is currently ongoing. My experience with RAiISE has been completely different to my existing trustee role, inevitably because RAiISE is just at the beginning, and so it is nice to be able to have both of those perspectives. More importantly, in planning with the rest of the trustees at RAiISE, I’ve been able to use my experience with Fibromyalgia Action UK to inform what we’re doing at RAiISE – a clear demonstration of how much I’ve learned, and how far I’ve developed, as a trustee. It’s another reminder that age doesn’t have to be a barrier!

My take away points

I’ve found this week to be so interesting – namely because I love to hear other people’s stories – how they became involved in their charities, and the experiences they’ve had along the way. It has also been positive for me, as I’ve found myself reflecting throughout the week on my journey as a trustee – the highs, the lows, but most importantly, just how far I’ve come – including thew new friendships and positive working relationships that I’ve developed along the way. If I was to speak to my younger self now, or to any other person in a similar position, I’d say the following:
  • If it’s feasible, go for it! This could be an incredible opportunity for you to be able to make a difference. If you’re able and willing, say yes!
  • Remember you’re not signing your life away. Yes, you do have to sign papers, but you’re not committing your life to it. Give it your best shot, but don’t beat yourself up if you feel it’s not for you, or if circumstances change… things can always be sorted out.
  • You may not be able to change the world in one day, but you can change a small part of the world in a really good way. Ambition is good, and never lose it, but you do have to set your expectations somewhere, to avoid disappointment. Setting achievable goals and working towards them is the best way to move forward. After all, small changes can ripple into bigger and better outcomes.
  • You are never an imposter. It’s very easy to begin comparing yourself to other trustees. Some may have been in senior management positions for years. Others may have letters after their name. Some may seem to know everything there is to know about the charity and the area within which the charity is working. That’s all amazing – but stop comparing yourself to them. You bring your own unique set of skills and experiences – which are just as valuable. You may not even know what these are yet, but that’s okay! Take this opportunity to learn from others, develop your own thinking and skills, and see where it takes you…you may just surprise yourself!
  • Remember you are a volunteer. I still struggle with this – and could quite easily spend 40 plus hours per week just on my charity work (not going to lie, that happens sometimes!) No matter how much work you do, there’ll always be more to do, and you’ve got to prioritise your health and wellbeing – and for many, that also includes their day job too! This may be easier to do in larger charities who employ staff to undertake certain duties, but when it comes to smaller charities, as is the case with Fibromyalgia Action UK and RAiISE, much of that work falls down to the trustees. So do your best, don’t feel guilty, and try to set aside time when you’ll do your charity work. It’s also perfectly acceptable to see if your colleagues could maybe complete an urgent task if you’re unable to do it.
It may be hard work, and it may be frustrating at times, but being a trustee has been one of the most rewarding things that I’ve done. It has challenged me and it has changed me… but I’ve loved the journey so far. I’ve met some incredible people through my role as a trustee, and I so look forward to being able to continue working towards making a difference, long into the future!  

Written by simonrstones

Simon R. Stones BSc (Hons) is an award-winning patient advocate, consultant and researcher from Manchester in the UK, who was the winner of the international WEGO Health Award for Patient Healthcare Collaborator in 2017. He is a passionate advocate and ambassador for people living with invisible illnesses, inspired and empowered by his own journey with juvenile arthritis, fibromyalgia, and inflammatory bowel disease since childhood. He is currently an Associate Fellow of the Royal Commonwealth Society, a trustee of Fibromyalgia Action UK and RAiISE, and board member of the European Network for Children with Arthritis (ENCA) and the European Network of Fibromyalgia Associations (ENFA).

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