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“Living with lupus [a systemic autoimmune disease] is difficult. I thrive by staying positive,” says 2019 Team of Advisors member, Juana (@Juanymata). Advocating on behalf of lupus patients like herself is one key way Juana stays positive.

Off and running

Only months after being diagnosed with rheumatoid arthritis and systemic lupus erythematosus, Juana Mata and her two sisters formed a team to run in a local lupus fundraiser. They soon understood the pressing need for more support and useful information for patients, their families and caregivers. They also understood the need for more funding on the path to a cure.

Knitting communities of hope

Tejiendo una comunidad de esperanza

Less than two years later, the sisters launched Looms4Lupus.org, a support group to empower minority families affected by lupus to take charge of their lives and kindle hope. For nine years, they have been running bilingual monthly support groups and include art therapy sessions in the central San Gabriel Valley region of Los Angeles County, California. They support not only those living with the illness but also caregivers and loved ones. And just this year, they launched a Facebook Live video to broaden their reach.

Advocating with local, state & national officials

Beyond helping families through in person and virtual support groups, Juana advocates with officials at all levels of government to raise awareness, amplify the patient’s voice and spur federal funding for research. In the last two years, she has been an active advocate in Washington, D.C., sharing her story with legislators to communicate the urgent need for research funding for lupus and fibromyalgia. In recognition of her lobbying efforts, she was invited to represent Southern California in accepting the proclamation declaring Lupus Awareness Month in California. And, she was honored to receive the proclamation declaring World Lupus Day from Senator Susan Rubio in Sacramento.

Inspiring advocacy

Juana is also a frequent speaker at autoimmune disease conferences across the country and a member of many task forces, councils, and associations. She also gets her story out across media channels—from TV interviews to writing blog posts for the Lupus Research Alliance to serving as a PatientsLikeMe Team of Advisors member.

Inspiring optimism

“Living with lupus and overlapping conditions is difficult. Advocating helps me stay positive knowing that my efforts will not only help me, but also future generations,” explains Juana. “My work gives me and others hope for new medications, and one day maybe even a cure for lupus and overlapping conditions.” That’s 60 hours a month that Juana logs in with her sister Estela by her side generating faith in a better future.

Share your advocacy journey

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Chills. Goosebumps. Tingles. “Autonomic sensory meridian response” or ASMR is described as a pleasurable wave of calm that comes to some people during exposure to gentle actions and/or sounds: think whispering, tapping fingernails or turning pages. These ordinary audio and visual triggers can inspire a deeply soothing effect on many people – making ASMR potentially appealing to people living with depression, anxiety, PTSD or even chronic pain.

“I find ASMR videos to always be extremely calming,” says one PatientsLikeMe member. “It’s basically the ‘tingles’ or a very chill feeling you get when you watch certain repeated motions or hear soft-spoken or whispered words… Give it a try, especially in moments of panic, anxiety, or agitation.”

Other PatientsLikeMe members have also talked about ASMR in the forums and in their treatment evaluations (join PatientsLikeMe or log in to see what they say).

With meditation, podcasts and soothing music as tested tools to inspire calm, it’s no secret that sound can bring on relaxation. But what exactly is ASMR and how can it help people living with chronic conditions?

The soothing art of ASMR

ASMR is a nonclinical term coined in 2010, and the trend has its origins online. Before it had its “official” acronym, the hard-to-describe experience and its growing presence online was mostly regarded as a quirky YouTube niche. Now, ASMR has become a full-fledged phenomenon with enough hype to place it at the center of a beer commercial that ran during the Super Bowl and a recent This American Life segment titled A Tribe Called Rest.

ASMR brings on what many people describe as a tingling at the crown of the head, which may continue down the spine and the rest of the body, in a wave of euphoria, followed by zen-like relaxation. Not everyone experiences ASMR in response to these stimuli, and there is no comprehensive data as to what percentage of the population does or does not experience it, but tens of millions of views of ASMR videos suggest that many people are indeed drawn to its effects.

Even before it had a name, ASMR had mass appeal. Bob Ross served as a proto-ASMR artist – people zoned out to the dulcet tones of the painter’s voice paired with the soft sights and sounds of his brushstrokes.

These days, many ASMR fans still turn to Bob Ross, as well as a number of other YouTube “ASMRtists” and channels that have emerged, such as Gentle Whispering and ASMR Darling.

The science behind the shivers

Not unlike the chills – or frisson – brought upon by a pleasurable or poignant piece of music, dopamine floods the brain’s reward system when the neurotransmitter (trigger) is activated. This, in addition to the building anticipation in the moments before the music’s crescendo, may create the same type of brain activity that occurs in response to the sights and sounds of ASMR videos.

Researchers are working to generate proof of the existence of ASMR as a physiological experience and not an imagined one. After watching an ASMR-trigger video, participants in a University of Sheffield research study who claimed to experience ASMR registered lowered heart rates than those who didn’t identify as experiencers of ASMR. In another study using functional magnetic resonance imaging (MRI), researchers monitored brain activity during an ASMR video-watching session, with participants registering each instance of the signature tingling sensation. Their scans showed activity related to the reward (NAcc) and emotional arousal (dACC and Insula/IFG) centers of the brain.

A sense of calm

Columbia University sleep disorders specialist Dr. Carl W. Bazil suggests ASMR videos as a way to unwind. “People who have insomnia are in a hyper state of arousal,” he said in the New York Times. “Behavioral treatments – guided imagery, progressive relaxation, hypnosis, and meditation – are meant to try to trick your unconscious into doing what you want it to do. ASMR videos seem to be a variation on finding ways to shut your brain down.”

One Patients Like Me member agrees in its ability to both lull him to sleep and help promote restful slumber: “Lately, because I had stressful dreams, I watched ASMR video while my meds were kicking in for about an hour before my sleeping time… It took some research and some trial-and-error to find an ASMR artist who suited my anxiety and entertainment wants. My dreams were then neutral in my experience.”

The majority of people who create ASMR content are women. Using calming voices, they convey tenderness and care and sometimes even emulate touch aimed toward their viewers. The sense of pleasure that the videos incite in some viewers have led come to label ASMR a “brain orgasm” or “whisper porn.” Most people do not report sexual stimulus from the videos as a prime motivator, as reduced heart rate is a common response, which is not typically associated with sexual arousal.

Have you tried ASMR or do you have questions about it? Chat with the community here, and remember to update your profile (under the “My health” tab) if you’ve tried it as part of your treatment plan.