By Gary Ho, Co-Founder, Gout Support Group of America
Stigma. Isolation. Hopelessness. These are just a few things that I’ve experienced during my journey with gout.
Thankfully, I have now been flare-free for more than a decade by successfully managing my gout. But my journey hasn’t always been easy.
Living with Gout
When I was first diagnosed with gout, it felt like no one understood the pain I was experiencing. Friends made light of the condition. Doctors insisted that I was “too young” for gout, despite the condition running in my family.
I felt completely hopeless. That’s when I decided it was time to take control of this disease. I started seeing a rheumatologist, Dr. Christopher Parker, and for the first time, I felt like I was heard. He worked with me to find the best combination of treatments to successfully manage my gout and provided a level of support I had not experienced before.
Starting a Support Group
Through my gout journey, Dr. Parker and I talked about how there wasn’t a lot of support for people living with gout. That’s when we decided to start what has now become the Gout Support Group of America. Our journey first started in Austin, TX, when we would get together with other patients to talk about gout.
These meetings were so helpful that we knew we needed to reach even more people. That’s when we decided to take it online and started a Facebook support group. This group has grown to more than 15,000 members and brings together people from across the country who are living with gout.
Patients ask questions, share their experiences and find hope through being connected with so many other people who are living with this painful condition.
Analyzing the Data
Knowing that the group has grown rapidly, we wanted to understand where people needed the most help. Through an analysis of over 8,000 posts, one thing was clear: patients need mental health support.
Group members used terms like stress, anxiety and depression to describe how they were feeling because of gout. According to the analysis, patients experiencing these feelings were more likely to only seek reactive care through short-term medications instead of proactive treatment that could help them manage their condition. The inability to effectively get gout under control leads to more pain and can worsen patients’ mental health.
Stopping the Stigma
Also contributing to patients’ worsening mental health is the stigma they face. Although the pain from gout is excruciating, many people do not realize how debilitating the disease can be. That’s why we are trying to normalize the conversation about gout.
There is nothing to be ashamed of if you are living with gout. This condition is not your fault. Building a supportive community can help you feel empowered to take control of this disease. That’s why we encourage all gout patients to join the Gout Support Group of America Facebook group and share their stories, meet other patients, and take back their lives.
