Health

Attending the HealtheVoices 2018 Conference

As anyone who has been blogging since 2014 or earlier will tell you, blogging has changed a lot in the last couple of years. When I first started in 2013, posts across the board were a lot less polished and personal. One thing that we did then that doesn’t happen often now? Recaps of your weekend! So today I’m throwing it back to 2013 and recapping my time at the HealtheVoices conference at the end of April.

Disclosure: Jannsen paid for my travel and accommodations, but all opinions are my own, per usual.

Have you heard about the HealtheVoices conference? I'm talking about my experience attending in 2018.

What is HealtheVoices? HealtheVoices (pronounced “healthy voices” is a conference for patient advocates. This includes people who have a wide variety of conditions – both mental and physical – as well as those who advocate for them. What I really loved about it was that there was such a wide variety of conditions represented. In fact, there were 40. FORTY! This is so awesome. It gave me the opportunity to connect with people who have some of the same experiences as me (both in terms of advocacy and living with chronic illnesses) as well as those who don’t. I learned so much over this weekend. The conference is put on by Janssen Pharmaceuticals, a part of the Johnson & Johnson company, and what’s so amazing is that they paid for everyone’s travel and accommodations. All 120+ of us.

What happened? It was a very full two-and-a-half days! We had sessions almost constantly, although there were breaks built in. I flew in on Thursday afternoon and we started right off the bat on Friday. There was a breakfast, which was great because I got to start meeting people almost immediately. After that, there was a group session welcoming us to the conference before we got down to business. One really cool thing about this morning was we were all assigned to our different tables, so it forced us to meet new people. Additionally, we did an icebreaker-type of activity together, so we got to know each other quickly. After lunch, there was another large group session titled, “The Power of Resilience: The Strategies for Thriving in the Challenging Situations We Face.” We heard from people who have been through really tough and difficult situations, like my friend Kenzie, who was in the ICU and in a coma earlier this year. The rest of the day was a variety of break time, an exhibitor fair featuring the various sponsors of the conference, and networking before dinner. Once again, we were assigned tables.

Saturday was a bit different, as most of the sessions were split, meaning we had at least two options for each session. After a group session where we learned about utilizing Twitter for advocacy (a talk done by someone from Twitter!), we started having breakout sessions. The first options were “From Dreams to Screens: Video Filming and Editing Essentials” and “Striking a Balance While Advocating Across Multiple Conditions.” As some of you might remember, I once upon a time tried to have a YouTube channel, but I honestly didn’t like editing, so I stopped, and the first option was not right for me. But one thing I’ve been struggling with in recent years is how to advocate for a variety of conditions. As you guys know, rheumatoid arthritis is my main issue, so RA and arthritis in general is the thing that I advocate for the most. But I have multiple conditions, and I don’t really know how to go about advocating for more in ways that are not just, “POTS is x and it affects me in this way,” for example. I found this super interesting, and I’m so glad that I went!

The next session options on Saturday were “The ABCs of Storytelling” and “Express Yourself: Using Visual Tools to Engage Your Community.” As you’ve probably figured out, I prefer words to images, so I went to the first one. While I initially wasn’t sure how much I could learn from this session because I’ve been blogging for 5 years and writing for 20, I actually learned a lot. After lunch, we had another group session, which was “Developing a Content Strategy: Planning Your Year on YouTube,” which was led by people from YouTube(!). I didn’t go to this one because my ankle was being rude, but I heard really good things about it.

Attending the HealtheVoices 2018 Conference

After that, we had more breakout sessions. The first options were “Working with Publishers To Create Accurate and Empowering Content” and “Podcast Project: You Can Do It!” As you probably figured out, a lot of this weekend was spent talking about different ways to produce content that advocates for your focus. I really like how these two options went into two very different but effective strategies for this. On another side of advocacy, the next session options were “Bravely Advocating in Our Diverse World” and “The Unwritten Rules of Business Etiquette.” As a white woman, I didn’t feel that the first option was for me, so I went to the second. That was cool because we went beyond the rules of don’t swear and dress nicely.

The last session of Saturday was actually called “Share Personal Experience and Advice for Living with Chronic Illness,” which I think was really cool because, as I mentioned, there are some similarities when comes to living with chronic illnesses regardless of your illness, but there are also so many differences depending on your condition. It was great to hear about other people’s experiences. And after this, we did the group photo before a break and dinner, followed by the HealtheVoices Open Mic Night. Sadly, I did not attend this as my ankle was extremely angry with me, but I hear that it was awesome.

Then, sadly, it was the last day. After breakfast, we learned about the Impact Fund, which is a grant for [PURPOSE]. We also got to hear from people who received this in the past and learn about their projects. After this, we had another group presentation called “Finding Strength & Unity in Our Differences,” which was exactly what it sounds like.

But on a completely different end, the last session before the closing was a performance piece from a patient about suicide and healing through connections. This was incredibly moving, and many people were in tears by the end.

Attending the HealtheVoices 2018 Conference

Want to learn what we learned? You’re in luck! A lot of it was streamed online. You can check it out on the HealtheVoices website. Additionally, I live tweeted a about half of the conference, so here are some of the threads.

Here are some of the awesome things about the conference:

Both Saturday and Sunday morning, there was a yoga session. I didn’t attend because my ankle isn’t exactly yoga-friendly at the moment, but I love that they had it.

There as a resting room, aka a room designed for us to rest in. There was plenty of couches and heating pads abounded.

The conference and the hotel went above and beyond for people who struggled physically, aka me. They told us to take any rest time we needed. The event staff went out and got a sharps container for me because I had to give myself blood thinner injections in order to travel. On Sunday, someone went up and got my suitcase for me because I can’t exactly carry it while I’m on crutches. I could go on and on.

The talks were led by cool people who work for cool companies, like Twitter, YouTube, Wego Health, Wisdo, and more.

I could go on and on. Basically, I loved it and I can’t recommend HealtheVoices enough.

Have you ever been to a conference like this?

Like this post? Check out:

 My Rheumatoid Arthritis Treatment + How I Got There, Hacks for Living with Chronic Conditions, 5 Items Every Immunosuppressed Person Needs, A Guide to Chronic Illness for Those Who Don’t Have One

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