People ask why I became a patient advocate. They want to know what it’s like to dedicate time to helping others with chronic illnesses like multiple sclerosis (MS).
In truth, it’s been a hard but rewarding journey, and one I’ve had to make alone. That’s why I want to help others who would like to start advocating.
I live with several chronic conditions, including urticaria/angioedema, obsessive-compulsive disorder and irritable bowel syndrome. However, it was my MS diagnosis, at age 28, that led me to patient advocacy. My experience, coupled with the lack of information and support, made me want to help people in a similar situation.
I started volunteering for various MS charities. This soon expanded into working with other “stakeholder groups”, such as:
- Pharmaceutical companies
- Healthcare professionals
- The NHS
- Individuals living with chronic conditions
My patient advocacy now spans continents. I hold writing, speaking and advisory roles. I’m also a patron or ambassador for several organisations. I’ve had some wonderful opportunities, and I’ve won many awards for my advocacy work. Still, it hasn’t been all plain sailing.
Here are six things to remember if you are considering becoming a patient advocate.
1. Everyone can advocate
I didn't identify as an advocate until I'd been doing advocacy for several years.
The good news is, "advocacy" can refer to various responsibilities, so anyone can be one. For example, as an advocate, you could:
- Share your personal experience on social media
- Lobby politicians for better healthcare policies
- Partner with pharmaceutical companies
- Ensure the patient has a voice when new treatments are developed
- Fundraise for charities
- Set up a support group for people with your condition
The options and opportunities are endless!
I tried lots of different roles before focusing on what I enjoyed the most. I chose what I felt I was best at, the most comfortable with, and had plenty of time for.
2. Find mental balance
Being an advocate can be mentally draining. It can feel like you’re always fighting for what’s right, as well as trying to manage your condition. It’s important to find balance so as not to become overwhelmed.
At first, I had to be mindful of how much time I was spending on advocacy because I was always thinking about MS. That meant I was never “getting a break”, even when I needed one most.
I was also learning about all the difficulties that come with the condition. I share some of them myself, but not all of them. I’ve had to learn not to “absorb” the burdens of people I’m helping and be firm about setting boundaries.
People often forget you have a condition too, so they may overload you emotionally. I must remember to look after myself first, or I won’t be able to help others. I’ve learned how to say no, and how to delegate. “Switching off” from advocacy is vital, even if it’s only for an hour or two a day.
3. Be prepared to learn every day
Some training courses can help with patient advocacy, such as those run by EUPATI, WEGO Health and WECAN. However, most of the time, it's an ongoing learning process for me.
I've learned through experience, and I read a great deal. I also join webinars, go to conferences, and share my knowledge with other advocates.
It's also okay to ask questions – and lots of them. Nobody knows everything!
Essentially, most of us become advocates because of personal experience with the condition. It's not because we trained first or took a degree to become one!
4. Connect with others
Sharing experiences with other patient advocates is always helpful.
There are various patient networks that offer different ways of connecting with others. Some examples include WEGO Health, the EMSP Young People’s Network and Lyfebulb.
These networks enable me to learn from other advocates, ask questions, and extend my work's reach.
I also connect with other advocates when I attend conferences and events. Advocacy shouldn’t be a solitary journey: there are plenty of us who are willing to help!
5. Remember, you can’t please everyone
As an advocate, I often share personal experiences and open up to complete strangers. Being authentic as an advocate is essential, even when you feel like you should be positive all the time. Showing your vulnerabilities on the bad days can help others to feel like they’re not alone.
That said, while I believe it’s good to talk, I’ve opened myself up to comments and opinions from people I don’t know. Comments can be good or bad, and people have made hurtful remarks in the past.
This used to upset me, but now I know it’s impossible to please everyone. Once I accepted this, it made my advocacy easier and less emotionally draining.
Rest assured, most of the responses are supportive and positive. They always give me a nice boost and keep me going.
6. Enjoy the positives!
Advocacy isn’t just about giving, it’s also about what you gain from the experience.
I’ve made some wonderful friends and met some fantastic people through my work. I’ve had some once-in-a-lifetime opportunities. I’ve learned new skills, helped people and expanded my support network.
I used to feel guilty for enjoying the positives. But advocacy is as much about the gains as it’s about putting care and effort in.
If you’re enjoying what you do and you’re passionate about it, you’re more likely to give it 100%.
NPS-IE-NP-00300 June 2021