Living and Thriving with RA: Why We Gather

285 LivingThriv

I made so many new friends this weekend. I respect and admire everyone’s strength. Thank you!

—Lidy Carmona-Golod

 I still can’t believe the weekend is over! I met many incredible people and made so many new friends! I have walked away from G6 feeling renewed and empowered! Thank you.

—Milagros De La Llata

 

By Deserae Constantineau

By the time I was in my midtwenties, I had lived with the pain and the destruction of rheumatoid arthritis (RA) longer than I had lived without it. While I led a relatively normal life and was surrounded by loving and supportive family and friends, I still felt incredibly alone. Though my loved ones knew that I was often in pain, they did not—could not—understand how my spirit was struggling, how my scars and crooked hands and visible limp were all I could see. I knew no one else my age who looked or felt like me. It was a terribly lonely time.

As fate would have it, my mother had taken a job with a national arthritis organization. Knowing I was struggling, my mom told me that the national juvenile arthritis conference was trying out a young adult program track. She had secured a scholarship, and I was to go to learn how to form a young adult program at home. I looked at this opportunity from a business perspective, not even packing a camera. I had no idea that the weekend would literally change my life.

I met Jessica the first morning of the conference. Jess was 30 years old and had the same deformities that I did: scars from knee replacements, crooked hands, and slight steroid cheeks. However, Jess had something I had lost: confidence. She had a career and a house, and she had not only been married but was now divorced and enjoying a lover. She was my hero. And by the second day, she was also my friend.

By the end of that weekend in 1999, I had a second family—a family of other people who were my age and coping with arthritis while trying to juggle college, careers, and families. We were just finding our adult identity only to have that identity shattered by a debilitating and misunderstood diagnosis. Yet we were no longer alone. We all recognized the power of this sense of connection, and we continued to gather informally year after year, creating a community of people who all understood one another on a profound level, without having to say a word.

In 2007, recognizing the lack of emotional support and recognition for people living with arthritis in the prime of life (adults diagnosed as children and those diagnosed while raising children), five members of the original group from the 1999 meeting came together to found Arthritis Introspective (AI). Kevin Purcell, three other women, and I created the organization with the mission of addressing the unique challenges of this often-invisible population.

Today AI serves those living with RA in the prime of life in three ways: local AI Support Systems, the AI website (arthritisintrospective.org), and the Arthritis Introspective National Annual Gathering Conference. The event is a three-day educational opportunity filled with both professional and volunteer-driven physical and emotional health and wellness sessions, along with many opportunities for participants to share the challenges and the triumphs of living with this difficult and unpredictable disease. Each year the Gathering has grown; in May 2013 (our sixth year) we were honored to welcome 100 participants. Half of those attending had never been to an AI event before, and 60 percent of participants reported having adult-onset arthritis. These statistics marked a major milestone for a grassroots organization with a small but mighty leadership team.

I have come to understand that there is something about shared suffering that brings down the walls we often build to cope with this chronic illness. In his book A Different Drum, author and activist M. Scott Peck wrote, “I am not alone. Once a group has achieved community, the single most common thing members express is: ‘I feel safe here.’” That is exactly what AI and the Gathering provide for members. Women from vastly different backgrounds and lifestyles come together and are soon sharing secrets and struggles like sorority sisters. Nothing is off limits, from problems with prescriptions to sexual positions, and there is always something new to learn.

Since that fateful weekend in 1999, I have had the opportunity to both inspire and be inspired by the women I have met through our arthritis community. I have celebrated women who are mothers, marveling at their astounding capacity; I have reassured women who fear having children; I have held the hands of those newly diagnosed and offered either silent support or stories from my experiences; I have listened to the tales of those who came before.

We all take medications to control the impact of RA on our bodies. Attending an event like the Arthritis Introspective Gathering is like medication for our souls. And that is why we gather.


Arthritis Introspective is a national nonprofit organization dedicated to uniting those living with arthritis and its related autoimmune diseases in the prime of life through wellness education, empowerment, and local AI Support Systems. For information about Arthritis Introspective membership and to find if there is an AI Support System in your area, please visit arthritisintrospective.org and Like us on Facebook.


 

Deserae Constantineau, 38, is a freelance writer with a background in community relations and income development. In 2009, after months of serious health issues, Deserae made the difficult decision to go on long-term disability. She is now a full-time volunteer for Arthritis Introspective, serving on the board of directors and as the marketing and communications chair, and pursues freelance writing, public speaking, and opportunities to serve as an advocate for arthritis and disability awareness. You can reach her at deserae@arthritisintrospective.org.