I’ve come to know and truly appreciate the dedication and hard work of these psoriatic online advocates. I’m glad we spent a few days together in April in Chicago for meetings. From left to right: Todd, Sabrina, Alisha, Summer, Lori Ann, Jim, Ya Hsin, Me, and Huy (kneeling).
HealtheVoices is an incredible conference for online health advocates. I’ve been blessed to participate in the conference for all three years, serving on the advisory panel last year. This year I went wondering what I might learn this time around.
The conference is like drinking from the proverbial fire hydrant. I came away from the Facebook seminar thinking I needed to put much more effort into my Itch to Beat Psoriasis FB page. Other sessions I came away feeling like I needed to write a book, read more articles, or get more involved in legislative advocacy.
Then I went to the YouTube session amazed at how video is taking the world by storm. I generally don’t like to make videos, but I’ve done a few and am open to make more for psoriasis advocacy. I immediately messaged my family asking if I should start a YouTube channel, and if they would help me.
They ignored the request at first. Then a couple of them nicely, but firmly said no. Not that they didn’t want to help me, but that I already have enough on my plate to keep up with. They didn’t think I needed to add something new at this time. I needed to hear that.
As I flew back from Chicago to Sacramento these two themes resonated with me: appreciate what I have, and be open to change.
Appreciate What I Have
Since the first HealtheVoices conference in 2015, I began to get involved in psoriasis blogger groups and advocacy opportunities. Prior to that time I didn’t check emails to join pharmaceutical meetings, or meet-ups with other psoriasis advocates. Once I started saying yes to invitations, I became part of a vibrant community of online advocates.
Seeing other advocates, especially those in the psoriasis community, became a major motivation for me to go to HealtheVoices. Janssen began sponsoring the I Know Pso group late last year. The day before HealtheVoices would be our second face-to-face meeting. Since I attended the American Academy of Dermatology meeting in Orlando, I spent some time leading a session on my observations in the I Know Pso meeting.
The I Know Pso psoriasis blogger team met at the Swissotel in Chicago on April 20th, the day before HealtheVoices17 started. I led a session sharing my observations from the American Academy of Dermatology conference in Orlando in March.
I’m grateful for the I Know Pso group, as well as other groups that gather and advocate together for psoriasis related causes. I want to do well in keeping up relationships there and building into those teams and groups.
I also enjoy writing best. While I have a Facebook page, Twitter handle, and even a mostly dormant Instagram account, I prefer blogging. Writing for different sites and organizations gives me the opportunity to practice my art creatively based on the mission and individual needs of each one.
Besides advocacy, I have a wonderful family with three children who still need their dad day-to-day, and a church that depends on their pastor from week-to-week. I have a full life that I came to truly appreciate at HealtheVoices.
While I would love to do more of this or that, I left the conference content with what I do have.
Be Open to Change
At the same time I realized that I need to change. The Everyday Health VP Editorial Director, Amy O’Connor, led a workshop on “Mobile-Gedden.” The story board contains the original title, “Storytelling in a Mobile World.” The takeaway for me is that people look at content on mobile devices more than ever before. That means optimizing content for those who are on the go.
Amy O’Connor, the editor ultimately overseeing my Everyday Health blog, led the Storytelling in a Mobile World session, which she renamed “Mobile-Gedden.” The story board is a great example of the art work created real time during each session.
That session opened my eyes to the changing world. In the old days (well 10 years ago anyhow) I marveled at how I could get into someone’s living room through their computer screen. Those with a stigmatized and visible condition like psoriasis, I figured, might not go to a support group or go out of their way to meet with others with psoriasis. But they might read a blog and connect to a person like myself sharing my experiences living with psoriasis.
The paradigm shift is to think about going with people to the doctor’s office, shopping, or the gas station. I resisted that change, still thinking about the living room. But the session, and the conference as a whole, challenged me to be open to going where people are.
This idea of adapting to change is a theme for my life. As a middle ager (I can’t believe I’m almost 46!) I’ve begun the march back toward nostalgia. It’s not that I don’t see changes or what’s coming, it’s that I don’t like it. But I’ve dedicated my life in the service of others. Why would I not be willing to go where they are?
I’ve had some distance from the conference held April 21-23. Life didn’t slow down much for me, but I did stop long enough to appreciate all the great people and opportunities in my life. I challenge myself to adapt and change each day.
I came away from the conference less with new found ideas and initiatives, and more gratitude and rededication to serve others the best I know how.
Thanks to Janssen for sponsoring HealtheVoices 2017, including covering my travel and conference expenses. All thoughts expressed here are of course mine.