In March, I was invited to the HEALTHeVOICES 15 conference for online patient advocates. The invitation was sent to “people living with a health condition who have developed an online presence . . . in order to serve as a resource for other people impacted by the condition.” The stated goal was to empower online health advocates by providing resources and networking opportunities. Sounded incredible, especially since Everyday Health sponsored it, along with Janssen Pharmaceuticals, who offered to pay my travel expenses.
My initial thought was that it was too good to be true. People try to take advantage of those with chronic illness all the time. Free travel? My spam folder is bursting with so-called cures and opportunities. But this one felt different. My wife encouraged me to go. My work allowed me to take my vacation time to attend. All the stars aligned for me attend the conference in April, in Jersey City, New Jersey.
I will focus this post on my thoughts and reflections from the conference. If you want a great summary of the speakers and topics at the conference, see World of Psychology, a PsychCentral blog by John M. Grohol. Here are three things I took away from HEALTHeVOICES 15:
1. Personal Health Stories Are Powerful
The conference brought together about 60 patient advocates sharing their health stories online. You can find tons of medical information at reputable health web sites. But it’s the personal health stories that gives flesh and bone to that information. These stories connect us to one another. They tell me I’m not alone with a chronic illness, and that I’m not just a medical number with a 15-minute appointment. I heard many stories that inspired and humbled me at the conference.
I started writing the Itch to Beat Psoriasis almost eight years ago to tell my psoriasis story. At the time I didn’t notice many others openly sharing online what it’s like to live with severe chronic skin disease. Today my goal is still the same — share my story and how it connects with the evolving medical science of treating psoriasis. My hope is that others can connect to my story in an informative, personal way, and be motivated to share their stories.
2. Support Is as Vital for Caregivers as It Is for Patients
Those who care for others with chronic health conditions can relate to the challenges. The never-ending routines. The daily responsibilities of caring for another’s needs. The anxiety of a loved one’s uncertain health. Those who take care of us need a support team to care for them. They need a self-care regimen to have the strength to care for others. I know this as a minister with a congregation. I know this as the parent of a child with bipolar disorder, and as the husband of a wife born with spina bifida. And I know this as a psoriasis health advocate. I lovingly fill these roles of caring for others. However, there are times I need to recharge and find support too, especially with my own health condition to manage daily.
This point resounded loud and clear on the topic of “compassion fatigue” at one of the HEALTHeVOICES sessions. The Compassion Fatigue Awareness Project’s web page describes this condition well:
Caring too much can hurt. When caregivers focus on others without practicing self-care, destructive behaviors can surface. Apathy, isolation, bottled-up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labeled: Compassion Fatigue.
The message of finding support truly hit home for me. For a long time I felt I had to do life mostly alone. I experienced the burnout of trying to do so even though I didn’t have a label for it. But I eventually learned that I needed to reach out. I used social media to connect with others, joined local support groups, and opened up to my church community. The conference reminded me once again of the importance of self-care and a vital support network.
3. Others Living With Illness Can Inspire You to Keep Going
Finally, I felt empowered and encouraged to keep going as an online psoriasis advocate. I’ve wanted to stop blogging many times. At the conference, I met others who also shared that they have wanted to quit. Their stories gave me the fuel to want to keep reaching out to others any way I can. I would also love to see more in the psoriasis community actively engaging with one another virtually or otherwise.
What was it like for me to attend HEALTHeVOICES? I emailed an event organizer a reflection, which I share here as my concluding thought:
Many times as a psoriasis sufferer I feel less human because of my physical limitations and condition. But in a space with others also living with chronic illness (and not hiding it), it’s apparent we all have limitations and are better off acknowledging them and living life to the fullest.
Each of the health advocates at the meeting made a poster detailing what he or she wanted people to know about their condition and the conference. You can see my poster above.