Life has a funny way of working out. It certainly doesn’t feel that way when you are diagnosed with a condition like Crohn’s disease, or going through a flare, when there seems to be very little to look forward to… but things can and do change.
Twelve years ago, I could never have imagined that I would be doing what I am doing right now. I was devastated when I was diagnosed with Crohn’s disease at the age of 14, which on top of my existing juvenile arthritis diagnosis, felt like another hurdle that I may not be able to overcome. Fast forward to 2020, and my outlook on life is very different, with those awful and challenging experiences fuelling everything that I do.
We’ve all heard the age-old advice of spending your time doing something you love. Growing up, I never realised that this would happen through patient advocacy – but it did. Even going back to the early 2010s, I had never heard of the term ‘patient advocacy’, and I had certainly not met any other advocates doing what I, and so many others now do. When I discovered it, there was no stopping me.
“If you do what you love, you’ll never work a day in your life.”
My patient advocacy journey began in 2012, when I was invited to become the first young person’s representative on a national clinical studies group for arthritis and other rheumatological conditions in the United Kingdom (UK). The invitation came from my former paediatric rheumatologist, who I met while attending a young person’s ‘meet and greet’ event at the hospital. At this point, I had been under the care of adults for around 12 months, so this was an opportunity for us to meet other young people in adults, while also being able to chat to those still under the care of the paediatric team. It’s hard to believe that this was only the second time that I had been in the presence of other young people with arthritis – the other time being in 2010, at the age of 16, when the hospital held an information day for young people. I had gone through the majority of my childhood without meeting another young person with arthritis or Crohn’s disease. It’s hard to believe it, but in the days when social media hadn’t really taken off (but when MSN Messenger was a thing), it was pretty difficult to be able to have a conversation with somebody else who ‘understood’. Having been presented with this new opportunity to help embed the voice of young people in research, I jumped at the opportunity to get involved.
I attended my first meeting in December 2012 in Manchester, down the road from where I live and where I was studying. I didn’t know what to expect, other than I had over 50 pages of material to digest ahead of the meeting. Thankfully, I was able to meet an experienced parent who was in a similar role to me on the group, but instead representing the patient and not-for-profit organisation voice. She was a huge source of help, inspiration and reassurance when I was sat in a room with over twenty of the most experienced, talented and ‘famous’ healthcare professionals and researchers in paediatric rheumatology from across the UK. While they were all lovely and made me very welcome, I found the experience totally overwhelming. I struggled to ‘understand’ what my role was, and I really didn’t appreciate the value of my experience, thoughts and ideas – which are the very insights needed to make research and care better for other people, like me.
As the years passed by, I met more and more researchers, healthcare professionals, and other individuals, who invited me to join different meetings, projects and activities. I was genuinely excited by the opportunities presented, and the realisation that I could help to make a meaningful difference because of my experience of living with chronic conditions since childhood. Looking back, this phase of my life was the one where I felt I ‘moved’ to that final phase of accepting my conditions, looking beyond the limitations and realising my value. It’s where I evolved into a strong, able and confident advocate for myself, and others, in every possible situation.
The majority of my patient advocacy was and continues to be within the world of rheumatology. I feel as though I have an allegiance with rheumatology – it’s where it all began, and I’ve come full circle if you wish! I also expanded my reach to chronic, long-term conditions more broadly, particularly focussing on the voice of children and young people, with a variety of different organisations and projects. The one area I felt I would like to ‘do more’ in was in inflammatory bowel diseases (IBD). This began with contributing to different articles and news pieces about IBD, before I branched out to a few different opportunities where I have been able to share my experience and help shape research and other activities for the community. One example was as part of an Immunology global community advisory board for a pharmaceutical company wanting to make a positive change to how they engage and involve the patient community. More recently, another new avenue identified was the CCYAN 2020 fellowship, which has been a wonderful experience.
People often ask ‘how’ I get involved in such advocacy work, and the answer is always because of ‘connections’. People I have met – either at conferences, other meetings, through fellow patient advocates, through healthcare professionals, and through social media, believe it or not. Getting yourself known is really important, and there are so many ways to do that. Platforms like WEGO Health (https://www.wegohealth.com/), Savvy Cooperative (https://www.savvy.coop) and of course CCYAN and the Health Advocacy Summit (https://www.healthadvocacysummit.org) are fantastic places to start, regardless of ‘where’ you are on your advocacy journey. The beauty of advocacy is that you can do as much or as little as you want. For some, advocacy is not for them – and that’s absolutely fine. For others, like me, advocacy is a part of daily life, where you quite literally live and breathe it – which is incredible. There really is no right or wrong. If you want to help and change things, then you should. There are plenty of people and organisations out there who can help you on your way too. You have your advocacy veterans, you have your advocacy newbies, and everyone in-between – each with a wealth of information, experience and talents to share. I can guarantee you that you will learn something from everyone you meet – I know I have, and that is often the best part of the job… meeting new people, constantly learning, and forging lifelong friendships, often out of pain and heartache. There’s something particularly beautiful and poignant about that.
As I look back, on what has now been eight years in patient advocacy, I feel incredibly blessed to have had the opportunities that I have had. It certainly hasn’t been ‘easy’, especially on top of living with chronic conditions, studying, caring for relatives, and also trying to enjoy some downtime – but it has all been worth it. For every person living with a condition who has felt less isolated… for every researcher who has changed the way they think because of something I have said… for every policy decision which has been informed by the insights I have shared… that is what matters. Everything else is a bonus. A very special, and emotional bonus came in 2019, when I was informed that I had been nominated, and selected as a finalist in the Shaw Trust Disability Power 100 2019 - the list of 100 of the UK’s most influential people with a disability or impairment. In October 2019, I was invited down to London for a reception at the House of Lords in Westminster for the launch of the publication, which was such an incredible honour. During the event, I was reminded of how fortunate I have been to be able to do what I do, when so many others are unable to do so – and that is exactly why I advocate. I advocate for those with no voice. I advocate for those who are trying to find their voice. I advocate for those who don’t have the strength or energy to fight right now. I advocate for those with a voice, to amplify and support it. Never, ever forget that your voice matters.
If I could give my younger, less experienced self some advice, here’s what I would say:
Your experience is invaluable. You have been through some difficult times, but you’ve made it. You have so much to give, and so much good to do in the world because of what you have been through.
Don’t be afraid of speaking up, speaking out, and challenging others. It takes some confidence to be able to articulate your thoughts and present them, especially when what you have to say goes against the norm. If you’re thinking and feeling it, the chances are that you aren’t alone. Be brave and get your message out there.
Embrace unknowns, challenges and critique. You aren’t expected to know everything. If you aren’t sure, say so, and then use that as an opportunity to learn and grow. If you are challenged about something that you say, it can feel as though it’s a personal attack, but in most cases, it’s not. It can feel disheartening to hear others disagree with what you think, and it can be upsetting if what you say is not embraced. Feel free to have your moment of anger, but then pick yourself up and move on – you’ve got this.
You don’t have to say yes to everything. Far too often, I have been a ‘yes’ person, succumbing to often unrealistic requests for me to contribute to different tasks. I’ve done this because I wanted to help and make a difference; however, it has sometimes impacted on my physical and mental health, as well as my time. You are able to say no and should exercise your rights to do so. The people you are working with should understand, and if they don’t, you may wish to re-evaluate whether they are the right people to be working with.
You won’t necessarily get on with everybody you meet. This is also another difficult one for me. I am a natural people pleaser, wanting to ‘get on’ with everyone. However, just like in reality, we aren’t compatible with every other human being – and that’s okay! There may be those where relations are kept purely professional, while friendships may be forged with other advocates you meet That’s part of life. Don’t feel ashamed or worried if those feelings arise.
There is space in the advocacy world for you. If you see other patient advocates and organisations occupying the space and think that you shouldn’t be encroaching on their territory – then get those ideas out of your head! You are just as entitled to be involved as everybody else, and don’t let the minority stop you from showing up. You are likely to come across certain figures who may believe that they are the only ones who should be active as patient advocates, but trust me, they’re in the wrong. The whole ethos of patient advocacy is to promote and protect the interests of patients and their families. As far as I am concerned, the more advocates we have, the better! Position yourself within communities who stand together to lift each other up. That’s where you want to be!
