From Devastated to Patient Leader – How to Kick Ass and Take Names As a Patient Advocate

I got to do something that meant a lot to me. I was a presenter at my favorite conference HealtheVoices! 

 

HealtheVoices is a conference designed for patient advocates of all different kinds of conditions who use social media to advocate for their cause. The name kind of says it all! Health-e-voices! 

 

This was my 6th year going, two online and four in person. My first was in 2018 and I have since then dreamed of telling my story at the conference, so I got to live a dream of mine! What’s next?!?! Fingers crossed they have me as an advisor next year. I have many ideas how we can grow our skills. 

 

This conference is special to me because of the amazing advocates I get to connect with each year, who are so uplifting and inspiring with their own causes. It is also a chance for me to develop new skills as an advocate on social media. 

 

Learn more about the conference here. 

 

Thank you Johnson & Johnson for sponsoring my attendance and having me as a speaker. 

Hello everyone.  My name is Eileen Davidson, I am known online as Chronic Eileen. 

 

Physical Description: I am a vertically challenged, 5-foot-nothing, Caucasian female, not a natural redhead, with lots of tattoos that make me look like a walking Halloween decoration. I only feel comfortable in black clothes. 

 

 

I am here to tell you my patient advocacy story so I can hopefully deliver you some inspiration and information to further kick ass at being the amazing advocates you all are. I first attended this HealtheVoices Conference in 2018, when I was quite new to advocacy and the experience. The connections and inspiration I received then were transformative to me throughout the last few years. Ever since then, I have dreamed of sharing this stage to speak about the topic that is close to all our hearts – being a patient advocate and how we use social media to leverage that. Public speaking terrifies me, but the 2019 HealtheVoices conference theme by Mike Durbin “I little heart can do big things” has stuck with me since. What we offer is not something that can be offered by a doctor but is so crucial in our journey of going through disease and health problems. 

 

 

 

I am honored to stand before you and speak today. Like many of you, I fell into this role by chance. I was diagnosed with rheumatoid arthritis at 29. I was a single mother to a two year old, I didn’t know I could even get arthritis before my 30th birthday or before I even had any  gray hairs or wrinkles. It sure gave me those, though. In reality however, I was a statistic, 1 in 4 women, or 1 in 5 adults, are diagnosed with a form of arthritis, often in the prime of their life or even as young as childhood. There are also over 200 forms of arthritis out there, so what happened to me wasn’t rare, I just chose to fiercely fight it. 

 

During my presentation I will be asking you to fill out those papers on your tables with questions. I wanted to add an interactive component to my presentation to motivate and inspire you all to kick some major ass when you return home. There is also a pledge card for you to put up on your wall, take a selfie with or do whatever your heart’s desire with it. 

 

 

This is not easy work that we do, I am grateful for conferences like this that push me further with my advocacy. I am here to make new connections and recharge my purpose too. 

 

 

This was not how I imagined my life before when I fell sick with rheumatoid arthritis. I didn’t even have a clue what patient advocacy was prior to my diagnosis, I didn’t expect to find my purpose in it. I honestly thought my life was over during the first years. I don’t know what scary dark pit I would be in if I didn’t have advocacy. I know advocacy saved me. 

 

 

 

 

Why did I start my advocacy journey? 

 

 

Who remembers the feeling they felt when they first read or watched a video of someone with the same condition as them explaining the impact it has on them? Who cried? I know I did. The same goes for when you first actually meet someone in person with the condition you have. I felt extremely lonely in my diagnosis but when I connected with others with the same condition, I was finally able to finally feel a sense of ease and comfort, and not one that my doctor could prescribe. 

 

Who here lives with a condition that has a bunch of stigmas and misconceptions?

 

 

Arthritis has many. It’s often invisible, it’s not an old person disease, it is a lot more serious than people understand and it has a huge impact on our lives that isn’t often understood unless someone lives with it themselves. The judgment, lack of empathy and understanding of others is really difficult to go through. These experiences are what lit a fire in me. 

 

 

I started my blog because I wanted others to know they are not alone in their struggles with chronic disease. I wanted to dismantle the misconceptions and stigma I was experiencing. I began my advocacy journey in mid-2017; my first step was I created my blog and social media channels. It has been the most rewarding experience aside from having my son.

 

 

 

 

There have been barriers in my advocacy journey that I have had to overcome or accept that I have no control over. Maybe you will relate to my barriers or maybe you have your own unique ones. On the papers in front of you, please feel free to write down your barriers as I speak. 

 

 

My first big barrier was confidence and fear. I feared being judged, made fun of, wrong or misunderstood. I was terrified I would be ignored or worse, receive online bullying again. I’ve experienced a lot of online bullying when I was younger when involved in a music scene. Removing myself from that toxic environment was the first elimination of my barriers to tackle. 

 

 

I was afraid to express myself and tell the world all that was wrong with me because I grew up being told to be ashamed of all that was wrong with me and that is something we don’t speak about, mental health or disability. I was afraid I would be seen as whiny and attention seeking, but to my surprise and amazement, the exact opposite has happened. As you can see, I am standing in front of you right now. Clearly something happened. 

 

 

I thought no one would listen, I was even told this by others… But now I can say I have had a significant amount of success as an advocate. I will go over what that looks like to me in a moment but first I have to talk about how I tackled my barriers to be able to call myself a successful or kick ass patient advocate.

 

Another barrier would have been knowledge and reputation. How I gained confidence in my advocacy. I wanted people to take me seriously in what I had to say, but I also knew I did not have a medical degree and there is so much misinformation on the internet, I did not want to fall in that category. 

 

 

A lot of people ask me how I got to where I am. How can they do it too? My answer is: 

 

 

• Time: Put the time in and give it time. 
• Volunteer and make connections with organizations: I say this because of the amount of connections, information, knowledge, education, motivation, opportunities and inspiration I have gained from doing this. What truly transformed my life and my advocacy was my involvement in health research. Pro tip:Get to know their marketing and communication managers, in the past they have mentored me into understanding the impact that arthritis has and skills in writing, social media, media, and more.
• Push for diversity. And be proud of your diversity – I am a low-income single mom, who is disabled and I do not have a university or college degree. I barely finished high school and went to beauty school. I used to be embarrassed about this and afraid of being judged when speaking to researchers or doctors, but I took the time to learn and build skills and realize how important my diversity is at the table. Now I completely own it. 
• Believe in yourself. Turn off that negative voice in your head. That negative voice has been my worst enemy that has held me back in life. I try my best to not let it do that anymore. 

 

 

 

My success to me looks like:

 

 

I don’t mean the amount of followers on social media, or how much I have been paid. While those are certainly nice, they don’t fully capture the value of advocacy. Advocacy is so much more than numbers. 

 

 

To me, success as an advocate is when I can look back at the scared girl embarking on her advocacy journey, terrified of hitting that publish button but if only she knew what would happen over the next 5 years. 

 

 

I have presented at numerous research conferences. I can now proudly say I have attended the Canadian, American and European Rheumatology Associations conferences. 

 

 

I have over 100 published articles online. It’s my photo that comes up when you Google “rheumatoid arthritis advocate”.

 

My blog and social media channels have been recognized as one of the best in arthritis by health websites and organizations. I am even listed as a credible resource on medical websites. 

 

 

I’ve been in the media a lot. If you are wondering why, arthritis is the number one cause of long-term disability and chronic health conditions in Canada, the US, the UK and more. 

 

 

 

 I have received recognition from the Canadian government and it’s on their website. 

 

 

 

I’ve designed shirts for NY Fashion Week.

 

 

I have raised thousands of dollars for arthritis care through bake sales, walks, bottle drives and just sharing my story to others

 

 

I’ve received quite a few amazing free products like a sauna blanket, TENS machine, and other pain or arthritis relieving products, that actually really have helped me with my disease. 

 

 

I’ve hosted online webinars and information sessions for patients.

 

 

I have received two grants from the Arthritis Society to host in person support group sessions at an arthritic clinic in Vancouver. One woman who’s been living with RA for 30 years had never met anyone else with RA her age before until she attended my group.Because of my connections I have made being a patient partner in research. I have world leaders in arthritis research come and speak with us, for 2 hours, instead of the typical short doctor’s appointment. 

 

 

Along with those grants, I’ve received two awards in recognition for my volunteering with The Arthritis Society. 

 

 

Not only that, but now I have self-love. I am proud of myself, what I have accomplished and gotten through. I have discovered a new passion in me, learned to be a better person: a happier person, a healthier person. I have had a lot of struggles in my life, but it wasn’t until I found patient advocacy that I felt like I had a purpose. 

 

 

But most of all, I have received countless emails from patients telling me that I have helped them through my blog and social media channels. Because of my words and my posts online, they feel less alone. I can remember the first time I read an article written by someone with my condition and how transformative that was for me, that feeling is why I became an advocate and my goal with each and every project I take on, in hopes somewhere out there I am giving someone else struggling with their illness that same feeling.

 

 

 

 

Burn out can be a barrier for me. As a single mother, living with multiple chronic illnesses I have a lot on my plate and I can feel burnt out or overwhelmed at times, especially with lots of deadlines and my disease activity is raging. Burnout is a real concern for many patient advocates. It’s important to recognize when you need to take a step back and practice self-care. Remember, you can’t pour from an empty cup. Give yourself permission to rest, recharge, and take care of your mental and physical well-being.

 

 

Over the years I have developed some tools to to tackle these barriers 

 

 

• Number one: Take care of yourself. Take a break if you need it.
• You don’t have to be perfect nor follow a perfect schedule. Honestly just doing the best you can do, with your health condition and the rest of what’s going on in your life is enough. Only give what you can and be okay with that.
• Make things easier for yourself: Create a media kit, list of hashtags you use, try AI to help you through symptoms, and be organized.  
• Only give where you see value, respect, and be protective of your energy. 
• Nourish your creativity by doing something interesting. 
• Don’t work for free: You deserve to be paid for your time, expertise, and lived experience. 
• Talk to other advocates you know for support. Avoid those who just want to compete with you, stick to those who are supportive and want to boost each other up. 
• Celebrate your successes, small and big, you deserve it. 
• Rejection happens, be prepared for it but know that other opportunities will arise. It is not a reflection on the quality of your work but on the organization and their current needs.
• Don’t fall into a guilt trap if your health gets in the way and you can’t do something you wanted or said you would. 
• Remember why you started. Look back at what you have accomplished and who you have helped. We only see a fraction of the impact we have. 

 

The biggest lesson I have learned as an advocate over the last 5 years: How the most powerful tool in your advocacy toolbox is your true authentic self. 

 

 

 

 

It can be easy to feel like you need to conform to societal expectations or the image of what a patient advocate should be. But let me tell you, embracing who you truly are is where your strength lies. Embrace your experiences, your strengths, and your vulnerabilities. It is through sharing our vulnerabilities that we can truly connect with others and make a lasting impact.

 

 

• Authenticity: In my time as an advocate I have come to learn that the patient can say no wrong, this is our story and our lived experiences. This helps me when I feel anxious before a media interview or speaking engagement. I am here, I am telling my story and I am unapologetically me. 

 

 

 

Some ways to showcase your authenticity are:

 

 

• Know your purpose and your message, who’s watching you. 
• Don’t hold back embarrassing or tragic details, be real. I’ve cried on live tv, twice! 
• Speak from the heart but with confidence and knowledge.  
• Be creative – Canva is my absolute favorite program to use for creating bold images for something that is invisible
• Never be afraid to speak up when you need to.

• Remember why you started and who you want to inspire

 

 

 

 

There is nothing more powerful than your authentic voice. Use it. Never underestimate the impact of storytelling. Sharing personal stories, whether it’s your own or those of others affected by the issue, creates an emotional connection with your audience – people like us whose lives have been affected by disease. It humanizes the cause and helps people understand the real-life implications of the work you’re doing. Use storytelling as a powerful tool to inspire others, elicit empathy, and spark meaningful change.

 

 

Even in the face of adversity, we have the power to defy expectations and make a difference. If I am going to be the sick girl, I might as kick ass at it. 

 

To end my presentation, which I have hopefully given you some inspiration to kick some ass once we leave here today I ask you to write down what your goals are, what are some steps you can take to achieve them. 

 

 What are my goals and what steps can I take to reach my goals?

 

• What are your goals? What steps did I take to reach my goals

 

I will share with you my goals, which are to write a book, finally get over my fear of doing a youtube or tiktok channel, and improve my social media engagement skills. Some are big, some are small, you might have the same goals as me or different ones, but I hope this weekend has helped you find some purpose in your goals and the connections you’ve made, inspiring you to take the steps you need to move forward with your goals.