Early Saturday morning, when you’d expect to find most teens and kids in bed, sleepy yet hopeful faces began filling the lobby of the Hyatt hotel in Anaheim, California. Secret handshakes were exchanged along with “What ups?” and young superheroes in wild costumes displaying strength and determination paraded their way to breakfast. Seated around the tables were family and friends, friends who have now become family, and the supportively placed teddy bear or two.
This was the Arthritis Foundation’s annual Juvenile Arthritis Conference held this year in Anaheim, California on July 20th 2013, and I was fortunate to attend as RAHealthCentral’s special correspondent.
JA patients and their families were already tired from the previous day’s events, yet thrilled to be taking on another day of learning and camaraderie with their fellow rheumatic community.
Discussions of the deliciousness of bacon soon gave way to introductions and a form of understanding that can only come from fellow sympathizers. People were eager to share who they’d met and what they’d learned thus far, and poured over the day’s schedule with eager anticipation.
The 1,250 attendees including over five hundred kids from forty-two different states and one family from New Zealand soon headed to their designated sessions broken up by age, from zero years to parents.
The JA kids and their siblings made their way to the second floor that had been turned into a colorful and boisterous camp. Volunteers lulled babies to sleep, while just down the hall four years olds attempted to swing a rope high enough for their too-tall volunteers to jump through, and eager seven year olds shouted out answers to fun fact questions. Many of the age groups were working on their ever-evolving superhero capes complete with jumbo initials and to-the-point mantras like, “Arthritis Sucks.”
A JA superhero proudly displays the cape he made in the 4-5 year olds room.
When I first walked through the quiet of the empty children’s floor early in the morning, it was hard to fight back tears. Having known the pain of juvenile arthritis since I was seven years old – a pain I want not one kid to understand – I was simultaneously saddened and frustrated that we still have no cure for such a consuming disease. I was momentarily overwhelmed by the site of cribs filled with blankets to soothe even the tiniest of ailing bones, but then reminded myself that at least for today, these families have each other. Today, there would be understanding that I could have only hoped for as a child.
As I made my way back to the main floor, a small sprite no more than three years old was boldly making her way up the stairs, merely because she could. Wearing her blue “I Am The Face Of Arthritis” shirt, her hair was swirled into a princess bun atop her head. She wore glittery pink face paint that lit up her eyes, and fairy wings that floated away from her back. She stopped and beamingly said, “Hi!” She then continued to climb the stairs with glee, because today she can.
This is the sort of infectious determination that was felt all through the conference. The appropriately chosen slogan of “Dream, Believe, Achieve!” was a direct representation of the attitude already held by so many, and was there to inspire those that have had a somewhat tougher year.
Truly feeling the magic of the conference, I headed into the break out sessions for the young adults. Having expected to quietly sit in the back of the room, I found myself immersed and contributing to the rich conversations slated for the day: Improving Through Moving, Introducing Arthritis to Family & Friends, and the blushingly popular Intimacy with Arthritis.
At an age where you’re labeled with a childhood disease, yet trying to navigate the world as an adult, questions abounded for the fearless leader of the conference’s young adult program, Jen Horonjeff, PhDc. She adeptly led the day of discussions simply wanting everyone to walk away knowing, “You have to be able to do what you want to do," and she helped provide the tools to achieve just that. Her infectious energy and self-deprecating humor put everyone in the room at ease, and gave the attendees a strong example of what thriving with arthritis can look like.
Taking a break from the conference’s activities, 13 year old Nikole gets a free 10 minute massage courtesy of Massage Envy, while her supportive younger sister Ashleigh looks on. Having had JA for 9 years, she knew not to pass up the opportunity, but only got in line for massage once because she “…wanted everyone else to feel how good it is!”
The group opened up with one another, pouring out their frustrations, laughing at the absurdity of living with chronic disease. They also shared ways they’ve learned to re-adjust their thinking and attempt to ease the mental struggle of living in pain.
The overwhelming consensus was that teens and young adults are most worried about how they are perceived, dealing with the daily judgments of ill-informed strangers, and the effect that has on their mental health. Offering advice to some of her younger counterparts, Elaine Maloney of San Francisco, CA advised them not to hide their disease, but share and educate others on the reality of living with JA. “What made me feel bad about myself was when assumptions were being made. So now I choose to control the information or other people are going to make those assumptions.”
In an attempt to do just that, all conference attendees were given the now iconic blue "I Am The Face of Arthritis" t-shirt and invited to flood Disneyland for an evening of head-turning advocacy and most importantly ear-to-ear smiles.
A group of JA attendees and their families are eager to ride the rides at Disneyland!
Groups of families and now lifelong friends roamed and wheeled around the park, cheering every time they passed each other yelling, "Nice shirt!"
After spending just one day at the conference, I left overflowing with determination and enough fight to keep me going for the coming year. I reconnected with old “rheum-mates” and made quite a few new ones. If I gained this much in one day, I can't even imagine what four days of this conference did for the other attendees!
After fighting for understanding throughout my childhood and teenage years, I will sleep a little easier knowing that until we have a cure, there are now conferences like this one.
Britt J. Johnson blogs on the absurdity of living with chronic autoimmune arthritis and migraines at www.TheHurtBlogger.com, and chronicles her daily experiences @hurtblogger on Twitter, Instagram, and Facebook.
Published On: August 09, 2013