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Why Community Is So Important If You Have Lupus

Updated: Oct 26


“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. Likewise, two people lying close together can keep each other warm. But how can one be warm alone? A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” - Ecclesiastes 4:9-12

What is community?

A study by the National Institute of Health defines community as, “A group of people with diverse characteristics who are linked by social ties, share common perspectives, and engage in joint action in geographical locations or settings.”


What is lupus community?

I am not a scholar from the NIH, but I would define lupus community as a group of people doing their best to embrace vulnerability and be open and transparent about the physical, emotional, and spiritual peaks and valleys of lupus. A lupus community should be a space to support and encourage each lupus warrior and meet them where they are. To go before, walk beside, and provide a shoulder to lean on. All the while, learning, loving, and growing...together.


If you live with lupus or another chronic illness, you may start to become aware of who you want your close “community” to be. You may start to see a shift in who you gravitate towards, who you reach out to, and who you let your guard down with.


This blog is meant to explore the benefits and obstacles of this process, and delve into why it is so important to find your “community” if you have lupus.


Collective Pain

Below is an excerpt from Brene Brown's book, “Braving the Wilderness”

“I know exactly where I was on January 28, 1986. I was driving down FM 1960, a busy four-lane thoroughfare in Houston, Texas. Suddenly, cars started pulling over to the curb. A few actually stopped right in the middle of their lane. My first thought was that a fire truck or ambulance must be coming from behind us. I slowed down to a crawl, but I couldn’t see the lights of an emergency vehicle.
As I rolled past a pickup truck at the curb, I glanced inside the cab and saw a man leaning on his steering wheel with his head buried in his hands. I immediately thought, We’re at war. I pulled over in front of him and turned on the radio just in time to hear the announcer say, “Again, the space shuttle Challenger has exploded.”
No. No. No. No. I started crying. I saw more people pulling over. Some were even getting out of their cars. It was as if people were desperate to bear witness to this tragedy with others—to not have to know this alone.
In Houston, home of the Johnson Space Center, NASA is not just a beacon of possibility in space exploration—it’s where our friends and neighbors work. These are our people. Christa McAuliffe was going to be the first teacher in space. Teachers everywhere are our people.
After five or ten minutes, cars started moving again. But now as they made their way back into normal traffic, they had headlights on. No one on the radio said, “Turn your lights on if you’re driving.” Somehow, we instinctively knew that we were all part of this procession of grief.
I didn’t know those people or even talk to them, but if you ask where I was when the Challenger disaster happened, I will say, “I was with my people—the people of FM 1960.”

This essay is adapted from Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone (Random House, 2017, 208 pages).


There is nothing more bonding than sharing a life-altering experience with a stranger. Nothing. Whether it be an event, like the Challenger disaster, or an illness, like lupus, we are wired to connect with each other during difficult times. We are wired for community.


I have personally experienced times when I looked into someone else's eyes who has lupus and knew exactly how they were feeling. At that moment, that sacred moment, we were bonded. Bonded on a level that I can't quite explain to anyone outside the "lupus community" realm.


Unfortunately, one of the biggest hindrances to embracing community is that this disease likes to trick people into believing that they are alone in their experience. It convinces people that they are the only one living with it, the only one up at night unable to sleep, the only one dealing with medication mishaps, and the only one that's depressed and grieving their former B.L. (before lupus) self.


But, can I share something with you? That is a bold face lie. You are not alone. Millions of people worldwide live with lupus and with lupus overlap illnesses like rheumatoid arthritis, Sjogren's Syndrome, fibromyalgia, and more. Though each person living with the disease is unique, you share a similar experience with millions of people from all over the world. Connecting with other lupus warriors is essential to counteract loneliness, help you process your grief, and cultivate joy even in your pain.


Collective Joy

Back in the early 1900’s a sociologist named Émile Durkheim first developed the term “collective effervescence” after witnessing what he described as a magical presence that he observed during religious ceremonies. He investigated this scene of connection, communal emotion, and “sensation of sacredness” that seemed to happen when people were engaging in something bigger than themselves. His evaluations concluded that these experiences of “community” would shift one's focus from self to group.


This is also true of finding a community of support when you are living with a chronic illness like lupus. Coming together to talk about life, love, and lupus provides a much needed release of the pressures that can build up when you are surrounded by people who don’t live with the daily ups and downs that lupus can bring. Additionally, It is an opportunity to shift your focus off of yourself and your pain and show support and love to someone else.



Whether it be a support group, a religious ceremony, a music concert, or football game, experiences of collective assembly affect us. Coming together allows us an opportunity to feel connected to something bigger than ourselves; it is an opportunity to feel joy, meaning, connection, and peace.


In our More Than Lupus support groups, we are each others cheerleaders. We not only rejoice in others' victories, we are inspired by them.


Community in the form of a lupus support group doesn't mean getting together to gripe about your current lupus plight, it means getting together and being glad you are not alone...wherever you may be in your lupus journey.

Community Resources

Finding community may present as a challenge in these COVID-19 times. Thankfully, there are many online resources to provide you with connection if you are sheltering in place due to the pandemic.


Here are some that I find helpful:

  • LupusConnect™: is an online lupus community where individuals with lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease. It’s an easy-to-use, online platform that encourages its community members to ask questions, reply to posts and read about others' experiences in a safe and comforting community.

  • Hospital Special Surgery: LupusLine® is a free national telephone peer counseling service focusing on one-to-one support for people with lupus and their families. LANtern® (Lupus Asian Network) is a free national support and education program for Asian-Americans with lupus and their families. SLE Workshop is a monthly education and support group for people with lupus, along with their family and friends. Charla de Lupus (Lupus Chat)® is a free national peer health education and support program for Spanish-speaking communities with lupus. Teen and Parent Lupus Chat Groups are monthly in-person chat groups for teens with lupus and their parents.

  • More Than Lupus: MTL offers a monthly In-Person Support Group that lends to an environment of acceptance, and community. We meet the third Saturday of the month, every month. The "Lupus Live" Facebook semi-weekly support chats are an amazing way to foster connections with others in the lupus community from the comfort of your own home or office. Facebook @morethanlupus


These are just a sampling of the many support resources that are available if you are living with lupus. If you are looking for a community to connect with, we are here, and we are eager to listen.


You are just one click away from finding your community.


Written By:

Kelli Roseta


**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.



October 2020


Sources:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1446907/

https://greatergood.berkeley.edu/article/item/why_experiencing_joy_and_pain_in_a_group_is_so_powerful


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