Why You Should Go to an Advocacy Conference

Patient Expert
Cathy Kramer

Imagine 122 advocates representing 40 different health conditions together for three days in one conference area. Now, visualize walls being torn down between illnesses as folks learn about conditions outside of their own. Most importantly, picture how each advocate grows as it becomes apparent that we are more alike than different. See the relationships that are built among new and established friends with the prime goal of making the lives of patients everywhere a little better.

In May of 2018, I attended the fourth annual HealtheVoices conference — a three-day event hosted by Janssen: Pharmacticals of Johnson & Johnson. HealthCentral was also among the event’s sponsors.

Attending events like this can initially be intimidating. Writing and sharing your story via social media is one thing, but meeting the people who know intimate details of your life is another. However, once guards are let down, you realize a conference such as this offers so much. I would like to share what I learned and hopefully tempt you to try a conference of your own soon.

Learn how to share your message

As advocates, we are continuously searching for ways to get our message to a larger audience. To make this a success, HealtheVoices enlists a group of advisors with health conditions whose job is to help create opportunities that are beneficial to the work we do. Workshops this year included starting a podcast, video essentials, connectable visual tools, advocating across multiple health conditions, tailoring your story to your viewers, working with publishers, diversity in healthcare, and business etiquette as a patient advocate. Plus, YouTube and Twitter both presented!

Connections! Connections! Connections!

I am continually amazed at the connections that can be made with advocates within my own area of expertise, rheumatoid arthritis (RA), but also outside of it. For example, I met a fabulous new friend at HealtheVoices with HIV. A group activity brought us together but our practice in gratitude is what made us instant friends. I felt comfortable asking questions about HIV that are unknown to me. My new friend’s enthusiasm in answering helped me to realize my questions were not stupid, but in fact a way for me to learn more. Isn’t that what we all want — to educate others about our illness?

Being with folks who get you

As I was listening to others during a dinner with a group of RA advocates, I realized the uniqueness of our conversations. Not only were we talking about the usual topics of families and jobs, but also medications, insurance issues, hair loss, and fatigue as if these were common dinner topics. How rare is it to sit at a table and not feel judged for what is happening with your health, but instead to know those listening totally get what you are saying?

Confidence to try new things

Facebook Live is an endeavor I have wanted to try for some time but never had the confidence to do. Right before heading down for our first dinner together, a fellow RA advocate posted a Facebook live video. I knew this was the weekend to do it and at dinner, we tried it together. Being with friends always makes things easier. After posting, I woke up early the next morning and did a solo video. Nothing fancy, just getting out of my comfort zone.

See another side of a pharmaceutical company

When you attend an event such as this, you see another side of the people behind a pharmaceutical company. Tears were shed freely and often by the people hosting the event. Hugs were the norm rather than the exception. The voices of patients and caregivers are changing the way we are seen by the very people instrumental in producing our medications.

One of the things I heard over and over from first-time attendees is: “When they say take a break if you need it, they mean it.” To advocates living with a chronic condition, this means a lot.

Fun!

If you can’t tell yet, fun was a theme shared over these three days. Open mic night really brought the group together as we had a chance to poke fun at our illnesses, read from a current article or post, share a video, dance, or sing a song that brought the crowd to tears.

HealtheVoices is a unique event that doesn’t leave your heart anytime soon. Fortunately, this year, a virtual experience was made available. As you have time, mosey over and take in some of the good vibes.

See more helpful articles:

9 Ways to Advocate for Rheumatoid Arthritis

A Beginners Guide to RA: How to Be a Self Advocate

4 Ways to Be a Great Advocate for Your Condition