The National Psoriasis Foundation (NPF) is taking part in the day with an initiative called Unload the Burdens of Psoriatic Disease. The burdens of psoriasis can be heavy. The IFPA reports that 1 in 10 people living with psoriatic disease worldwide is diagnosed with clinical depression. It’s not surprising to me that 48 percent have anxiety. In sharing my own psoriasis story I’ve highlighted how the challenges of living with this chronic condition reach far beyond the physical discomfort of skin lesions and plaques. I’ve talked about stigma, social anxiety, and fear of rejection. I’ve shared how psoriasis has negatively impacted my interactions with others and my personal relationships. But there are ways to lighten the emotional load. At a recent conference for online health advocates, I felt buoyed by being part of an affirming community. I wish I could have bottled that feeling up and taken it home.
A Space for Chronic Illness Advocates
Since 2015 I’ve participated in the HealtheVoices conferences, which aim to empower online health advocates. During the first years of the pandemic the conference met virtually, like so many other gatherings. This time it was held in-person in Philadelphia. I applied to be a small group cohort leader, which would provide me the opportunity to attend the entire three-day conference. But when I received my invitation to lead a cohort, I immediately had mixed feelings. On one hand, I looked forward to seeing old friends and making the small groups as interactive and engaging as possible. But I also felt anxious about contracting COVID-19. Traveling across the country by plane and attending a conference with over a hundred people felt risky. To lower the chance I might get COVID-19 on the trip I wore a KN95 mask whenever I was around others. The conference organizers also made each participant test for COVID-19 before entering the first session of each day. The trip was worth the trouble and risk. It wasn’t only that I could hear about others’ health journeys — always a highlight for me — or that we could learn important skills to better meet the needs of our respective online health communities. It was the sense of belonging and affirmation that made the greatest impression. As I flew back to Sacramento, I reflected on what made the conference feel so restorative. Here are four qualities of that communal space that helped me feel freer and lighter with my psoriasis, and that I hope to see in my communities at home.
1. Stresses Similarities
Each advocate at HealtheVoices has an online presence that serves those impacted by a serious health condition. I’m amazed at the extensive reach many of the advocates have. Even more impressive is how everyone treated each other as equals and partners. The humility I saw at HealtheVoices was refreshing, a recognition that everyone is in the same boat with health conditions that have altered the course of our lives. In stressing our similarities, we developed a base of trust in friendship that allowed us to better manage our inevitable differences.
2. Embraces Diversity
While I enjoy attending the HealtheVoices conference, it does take me out of my comfort zone. There are few places in my life where I experience the diversity of backgrounds that I find at the conference. It’s a great reminder that not everyone with a chronic health issue comes from the same ethnic background, region of the country, or socio-economic situation. Each health condition comes with unique symptoms, challenges, and treatments. When everyone chooses to embrace the diversity that we inevitably have, we create an accepting environment to tackle difficult issues.
3. Says the Hard Things
People with chronic illnesses need a safe space to say hard things without fear of judgment or criticism. Challenging topics discussed during conferences included health disparities, compassion fatigue, and burnout. It was hard to hear the way some advocates feel they are treated in healthcare settings. I had difficulty understanding the kinds of changes some advocates say they need. In one small group session, attendees didn’t hold back in voicing their frustration, anger, and disillusionment. Even though I didn’t always agree with what I was hearing, I found myself wanting to stretch my understanding and empathy. I found that an accepting environment goes a long way in bringing about healing and change.
4. Provides Growth Opportunities
Serving as a small group cohort leader gave me an opportunity to grow personally in a few different areas. For example, in one group session I learned how to make a proposal to share my advocacy work with local media before guiding the group members to do the same. While I like to lead groups alone, negotiating how to lead sessions with a co-facilitator made me consider other ways of approaching a task. I’m glad I took the opportunity to try new skills co-leading with someone I didn’t know as well. I came away feeling grateful for communal spaces that encourage members to try new things and support them in the process.
Be the Change You Want to See
Sadly, I couldn’t take HealtheVoices with me back to Sacramento. But I felt inspired to see certain aspects of the event carry over into how I related to my friends, family, neighborhood, and church community. I accept the challenge to be the change I want to see. Hopefully my doing so will lift the burdens of all those who feel alone and isolated with their health conditions or other life challenges.
