My New Attendee Experience at HealtheVoices 19

This past weekend I had the opportunity to attend the fifth year of #HealtheVoices19 in Dallas, Texas. I left back home to Chicago more inspired and empowered than ever, here are five reasons why.

 

 

But first, what is HealtheVoices exactly?

I didn’t know what it was until I stumbled upon it a couple years ago by chance through other patient leader organizations I was involved with. Those who aren’t an advocate or activist for a particular health condition and are on the outside looking in, may wonder what exactly goes on during this 3-day event. So I will give you a bit of an insider scoop.

HealtheVoices is an annual conference that is sponsored by Janssen Pharmaceuticals (part of Johnson and Johnson) led by Caroline Pavis.

It’s the first and only conference that brings online advocates together in one place, from various health conditions for a weekend to foster connection, learn and share their journeys with like-minded individuals.

The layout of events leave attendees empowered, inspired, motivated, and informed. There were various sessions, panel discussions and speakers teaching advocates how they can elevate their online presence (i.e. via website, blog, YouTube, podcast, social media, etcetera) for their communities.

For example, professionals from Twitter, YouTube and Healthline were just a few of the sponsored partners who led these sessions. Other presentations and discussions came from veteran attendees (advocates and activists who attended previous years) who either taught us how we can use humor in our communities to raise awareness, write a memoir, the proper way to address our state legislators and more.

 

 

“A little heart can do big things.”

 

Every year there is a specific theme that follows the weekend. This year it was, “A little heart can do big things.” The organizers wanted each of us to leave with a sense of motivation towards all of our endeavors now and in the future.  

The irony is that all of the attendees selected to go, are in fact doing big things whether we realize it or not. It was more of a reminder that what we put out into the world is important, worth it and to keep going- if it can touch just one person, we have done our job right.

This year it was the largest conference to date with over 140 health advocates from 60 + conditions such as cancer, arthritis, epilepsy, eating disorders, HIV, obesity, bipolar disorder, schizophrenia, rare diseases, to name a few.

 

How I feel inspired and empowered from:

Representing rheumatoid arthritis

It was a huge honor to represent the arthritis community. Even though I have been living with juvenile arthritis (now adult rheumatoid arthritis) for 15 years, I didn’t start writing about my experiences until 2016 while I was recovering from total knee replacement surgery.

Sharing my story led to the creation of my blog, Rising Above rheumatoid arthritis. Before that I found comfort and inspiration in reading other peoples blogs in the arthritis community, many of which were created by fellow advocates at this very conference. So finally meeting these people face to face was a surreal moment, mainly because I never really saw myself doing any of this if you asked me 10 years ago. It sort of just found me and landed in my lap, a calling if you will. 

On the pre-evening of the conference the Rheumatology PR & Communications team from Janssen invited the arthritis advocates out for a nice dinner at, Ida Claire.

 

I’m not being biased here but my fellow arthritis advocates are kickass. All of them are making waves of change. Mariah Leach, a mom, lawyer and creator of Mamas Facing Forward -a hub of resources and support for moms and moms-to-be with chronic illness, led a session I attended on advocacy and policy.

 

Eileen Davidson of the blog Chronic Eileen came all the way from Canada to represent arthritis. Being that her country has different needs and wants for those in our community, it was interesting to get a different perspective of how living life with arthritis is actually like outside of the USA. She is a single mom and works closely with organizations in her area. Eileen has already been featured on major online publications and news outlets in Canada.

Kate who attended HealtheVoices last year few weeks post-op (major props to her), has the Boston Lifestyle Blog Kate The Almost Great.

Carla, a Dallas native and creator of the blog Carla’s Corner had been an attendee of the conference since it began five years ago in New Jersey. She has had multiple joint replacement surgeries, so it was nice to hear from someone who has been in my shoes. These are just a few of the people whose blogs I followed long before I created my own. 

 

If there is a will, there Is a way motto

On the morning of the first day we were split up into assigned tables were we engaged in various ice breaker activities.

 

I talked to a cancer survivor at my table, who was told he had months to live but beat the odds decades later through clinical trials.

Another advocate for autism is unable to speak so he adapts by communicating in a different way. He writes down questions, comments or anything else he wants to say. Then that person he is communicating with can verbally reply or write it down. Another awesome tool (technology is a blessing in these instances), is a microphone that connects to his tablet device which turns into a voice recording of what he wrote down so others can hear.

Even though our condition areas were different at this table, I felt I could resonate with a lot of their stories. I was told by a surgeon my knee range of motion would probably be a certain way after my total knee replacement but I defeated the odds and my leg stayed straight. 

I also have a dictation device that can record what I want to type- super helpful when your hands are flaring. (Note: It’s called Dragon Speech Recognition). I realized my table mates all found a solution that would help them, even if it was needed to be modified or deemed impossible. We all have made it possible.

 

Confirmation that I am on the right path

Before attending this conference, I wasn’t sure if I could really accomplish the goals I had set out in front of me. I was feeling a sense of burnout for many reasons. I didn’t know if what I was doing was “enough.”

One of the panelists Anne Marie Otis discussed the mantra she uses, “I am enough, I do enough, I have enough.” While I have heard this before, it was a good reminder when I needed it.

The Mighty’s Mental Health Editor, Sarah Schuster led a panel discussion about self-preservation and how it differs from the well talked about self-care. Self-care are practices we do on a daily basis for ourselves, while self-preservation is how we can manage the work we do in a healthy manner. Going back to how I felt burnout, this discussion helped put things into perspective and i gained some good tips from what other panelists do such as, not working on Saturdays, being mindful of the present, setting health boundaries for when people ask you advice, refer to professionals and so on.

Barbie Ingle from the iPain Foundation gave a talk about how she felt her path was altered after a car accident because she wasn’t able to show up to her dream job the way she wanted to.

She shared a technique of writing down all the things she was in an “I Am” list. Everything that she felt was taken from her when it came to health issues, became insignificant when finding out who she was and owning it. 

 

Knowing that I am not alone on this journey

There was something called Open Mic Night on the last evening. Here attendees came on stage to share a poem, a skit, a laugh or a meaningful moment.

 

The beauty of these moments showed that while we have our designated health condition areas consisting of smaller tribes, we are all part of a big collective one.

Everyone has something they are battling and can relate to similar fears, worries, doubts, challenges or triumphs.

Chelcie Rice, comedian and Type 1 Diabetes advocate mentioned that collaborating, communicating or simply sharing another persons story or information, with your community even if it doesn’t fit the exact mold can bring greater awareness overall. You never know the ripple effect you will create.

 

A transformative healing experience

There was a question asked to us on the first day of how we are resilient. We tapped into major milestones on our journeys and asked ourselves how we can take those moments to leverage our advocacy.  

Of the many keynote speakers was a fashion photographer, Rick Guidotti who founded the nonprofit Positive Exposure.

Living with rheumatoid arthritis, I know what it’s like to go from an invisible illness to a visible one.

Learning to love my body was extremely difficult when my condition progressed at one point. Rick addressed the notion “Change how you see, see how you change.” The way you perceive yourself is the catalyst to your overall outlook on your journey. Many people who are facing an illness or disability are looked at with disgust or simply not seen as beautiful. I applaud Rick for all that he is doing to deconstruct the worlds view of this.

I savored every moment of the conference. At times I felt overwhelmed (but not in a bad way), there was just so much to take in being a newbie attendee. I hope to attend next year, as one time is truly not enough.

 

My plans going forward are to expand and work on my YouTube channel, continue to write content, publish my first children’s book, create an impactful video for the invisible illness community and get involved in policy more. I met new people and reconnected with old faces, though I didn’t feel I talked to everyone as much as I wanted to- three days goes by fast! Until next time, friends. My heart is full.

P.S.- If you are an advocate or activist for any health condition, I strongly urge you to apply. You won’t regret it! 

 

 

Disclosure: All thoughts and opinions expressed in this blog post or any other social media channel of mine is my own.