We’re dedicated to sharing the perspectives of people affected by chronic inflammatory conditions like rheumatoid arthritis (RA). That’s why we created Arthritis.com, a place where people living with RA can find inspiration, lifestyle advice, tools and disease information. Following is an article from Arthritis.com contributor Angela Lundberg, who is living with RA. Pfizer asked Angela to share her story and she was compensated for this article.
The RA community has been a major life saver for me over the last several years, since I first began connecting with others with RA via my personal RA blog.
Meeting others online helped finally give me a much-needed sense of belonging from those who also live with the constant, unpredictable joint pain due to RA, and a sounding board to express the emotional frustration of having a chronic inflammatory condition.
I didn’t realize just how isolated and lonely I was until I finally connected with others who also have RA, and who really understand what it’s like to walk (or limp?) in my “RA shoes.” All of the ups and downs of the disease, every sharp stab of joint pain due to RA, and every fear and worry about what the future might bring—these are heavy burdens to shoulder on your own.
After years of battling alone, I finally found support and solace from my new special tribe, my “RA family.” I’m incredibly grateful for this community and the genuine, close relationships I’ve formed and continue to develop.
My RA family “gets it”; they know what I’m going through in ways that people who don’t have RA can’t. Even the people in my life who I’m closest to, such as my family, can’t fully comprehend the daily challenges of living with chronic joint pain due to RA. Nobody can fully understand, I’d argue, except those who have the disease.
How did I survive all of my 20s—the most vulnerable and impressionable years of my life—without the support and empathy and love from my fellow RA community? I don’t know. But what I do know is that this community is now an integral part of my life, and I hope it always will be.
The photograph I chose to share depicts a glass jar with bright blue sticky notes spilling out of it.
The “jar exercise” was a confidence-building activity I participated in with my RA community. Everyone had to jot down anonymous notes of support and kindness about each other and then drop them into each person’s jar. Not only was this fun because it felt a bit like unwrapping surprise presents on your birthday, but it helped reveal what your fellow RA friends thought of you. The messages were affirmations of friendship, empathy, hope and love—all things that everyone needs to hear—but especially those of us who live our lives silently hurting and misunderstood most of the time.
Messages of hope, gratitude, kindness, and encouragement are scrawled upon each small square of paper:
“Grateful for your honesty and self-reflection”
“You will find your way—keep looking forward!”
“Thank you for being you!”
“Angela, I’m grateful for your sense of humor.”
“Thanks for the courage to speak up.”
“Miss Angela—Just seeing your face always brings a smile to mine. Thank you.”
“Stronger than you think.”
It’s almost embarrassing to read such heartfelt sentiments directed solely at me. I’m not used to such attention, yet when I received this lovely jar and slowly unfolded and read each note silently to myself, waves of joy and gratitude flooded through me. I felt so happy and lucky to know these people, the members of my RA family, whom I initially met and connected with via the often too-large and impersonal space that is the internet. We met first online, through blogging and e-mails and patient advocacy work, and then finally in person at various RA conferences.
Living with a painful chronic illness is hard. Really hard. And it’s especially difficult when it feels like there’s no end in sight, no light at the end of this dark tunnel of disease, and there’s no one to talk with about it.
There are tiny bits of light that poke through the pain, though. Small folded pieces of paper I can hold in my hand, reminding me that I’m not alone, I’m appreciated, and that I’m stronger than I think I am.
It’s important to develop, nurture and remember these relationships with your RA and chronic illness communities. Your RA friends and “family” members are the only ones who can honestly feel your struggles—and joy.
If you’re not already a member of the online RA community, I encourage you to jump on Twitter, Facebook or an RA blog and get involved. Even just reading posts from others makes me feel less alone, and I hope it might do the same for you!
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Original photograph provided by Angela Lundberg.