News & Events

Social media awareness campaign fosters visibility and acceptance for POTS

The Pendulum, Elon University’s Student News Organization
By:  Leena Dahal

Like any freshman, Maddy Gross began her school year in the fall filled with flurries of nervous, eager anticipation. The only difference was that her heart beat three times faster than everyone else ­— literally.

While her peers were adjusting to college life and preparing for classes early in the semester, Gross had to add another task to her to-do list: managing her Postural Orthostatic Tachycardia Syndrome (POTS), a diagnosis she received just three months after she started at Elon.

POTS, a disorder of the autonomic nervous system, affects the heart’s ability to circulate blood throughout the body while in an upright position.

As the syndrome causes blood to pull to the extremities, the heart rate to double or triple and the body to work twice as hard to remain in the upright position, people diagnosed with POTS often have to raise their feet to allow blood to circulate.

It was while she was in this “semi-upside down” position when Gross decided she would respond to her diagnosis in a positive and public way: a social media awareness campaign, Legs Up For POTS, that would allow POTS patients to gain visibility and support.

The journey to a diagnosis

Around the time when high school students are informed of college acceptances in March 2014, Gross, a Maryland native, began showing stroke-like symptoms, which eventually led to fainting and twitching.

After receiving every possible diagnosis — from epilepsy to brain cancer — she was prescribed seizure medicine. Still, all efforts to normalize her condition failed as her blackouts continued and her symptoms worsened.

During the summer, Gross would face a series of high fevers.

“They threw a Lyme disease diagnosis at me just based on my symptoms,” Gross noted. “The antibiotics they put me on actually made everything way worse.”

But it was at Elon where her ever-growing list of possible diagnoses would end.

Her roommate, freshman Darby Campbell, recalled the effects Gross’ symptoms had on her early start at Elon.

“She was not able to do much really because she was so sick,” she said. “She had to stay in our room most of the time, and it was really heartbreaking to see.”

After sustaining injuries from fainting in her dorm and hitting her head on a desk, Gross spent several days at Alamance Regional Medical Center and Duke Raleigh Hospital. The nurse overseeing Gross’ heart monitor at Duke Raleigh noticed that her heart would shoot up at alarming rates and shared her concerns with Gross’ parents.

After consulting a family friend who recognized the symptoms from her son’s diagnosis of POTS, Gross’ family returned to Maryland to visit a different cardiologist who officially diagnosed her with the syndrome after administering a tilt table test.

Her journey to that official declaration, which was riddled with complications and misdiagnoses, is not uncommon to many POTS patients.

The general public’s and health professionals’ lack of knowledge on POTS coupled with the variation of symptoms among patients make it one of the hardest illnesses to diagnose. 

According to Dysautonomia International, the average diagnosis period is five to six years. Alarmingly, 85 percent of POTS patients are also told at some point in their journey that it’s “all in their heads” or given psychiatric labels.

Finally under the supervision of health professionals who fully understood POTS, Gross’ mystery was solved and she could receive the appropriate medication and support she had waited for.

Living with POTS

But her story consists of more than just the diagnosis.  As POTS is a chronic illness, the medication she receives only temporarily relieves her symptoms.

The syndrome is also invisible to the outside observer, meaning Gross navigates through Elon with only a few people aware of what she experiences on a day-to-day basis.

“Even though Maddy is better, she still passes out at least once a week and has to frequently leave class to put her legs up,” Campbell said. 

According to Gross, POTS is beyond exhausting. With her heart rate spiking to unimaginable rates, she said she feels as though she is running even while standing perfectly still.

She compares the overwhelming sensations before she raises her legs to getting blood drawn.

“Can’t you sometimes feel the blood moving around? I start feeling that in my legs and feet,” she said. “It’s super weird.”

The sensations will heighten, causing her to feel more lightheaded. And then, the stroke-like symptoms occur­­ — her face becomes droopy, her words begin slurring, and she experiences difficulty speaking, moving and talking in coordination.

“It feels like my words are stuck in my feet where the blood is,” she explained. “And to connect them to my mouth takes forever.”

In these situations, if Gross does not raise her legs to circulate her blood, within a manner of minutes, she will faint — a situation she has faced multiple times during class.

“Somehow nobody notices,” she said. “I come back to consciousness really quick, but still, not fun.”

The campaign begins

During one of her visits to the gym — an activity Gross refuses to allow POTS to dictate — she decided to use the elliptical instead of the bike, even though she had been told not to exercise standing up.

“I don’t know what I expected, really,” she said. “But unsurprisingly, I started feeling my legs fill up with blood and had to go drain them.”

In a room filled with strangers, many who directed confused glances at her — clearly un- aware of what Gross was going through— this would prove to be a challenging feat.

“Not my finest moment,” she said, laughing.

With her feet in the air, her body semi-upside down, and her mind fixated on what it would be like if everyone understood — without explanation — that she was compelled to do this out of medical necessity, an idea began to flourish.

Rather than letting her idea slip when her blood finally pulled away from her extremities and the light-headedness began to fade, Gross immediately rushed home to execute it.

Envisioning a social media awareness campaign that called upon the community to post pictures of themselves with their legs up, just the way she and many other POTS patients do in order to manage their illness, Gross began “Legs Up for POTS.”

Starting with a Facebook page, her #LegsUpForPOTS campaign raises awareness about the syndrome, while encouraging others to share their own experiences  to foster an environment of acceptance, compassion and support.

 The rapid ripple effect that social media facilitates is pivotal to her campaign.

“Every person has their own social circle, so even if they’re just posting for me, they might inspire one of their acquaintances somewhere else in the world to look up POTS and try to learn something about it,” she said.

By spreading information about POTS to the general public, Gross hopes the information will result in doctors being less dismissive of patients’ symptoms and will lead to shorter diagnostic journeys.

Responses and Impact

Within a week, the page gained more than 150 likes as people from all over the country sent in pictures with #LegsUpForPOTS.

From ballet students stretching their nude flats towards the skies to a hall filled with people hanging “semi-upside down”— the immediate outpouring of support for the page was clear and powerful.

After becoming acutely aware of her community’s lack of knowledge on POTS, Maddy Gross is determined to spread information on “invisible chronic illnesses” to the general public. Photo courtesy of Maddy Gross.

According to Gross, every legs-up picture feels like solidarity in her illness. 

“It’s like saying to me, or to any POTS patient, ‘Hey, I’m trying to understand what your life is like, and you’ll never have to explain putting your legs up or whatever else you have to do to manage your illness to me,’” she said. “It tells me that they care.”

Gross’ mother, Meredith Gross, said the fact that Maddy initially felt self-conscious about putting her legs up — which often kept her from attending class or going out as much socially — inspired her to take her own legs-up photo while out in public.

“I felt a little awkward for sure,” Meredith Gross said. “But if Maddy endures some funny looks, surely I can do the same to increase awareness.”

She stressed the significance of Maddy’s campaign by highlighting that without awareness and obvious signs of disability, it is easy for the community to dismiss someone’s challenges and needs.

“The more educated [Maddy] becomes on  POTS, the more fired up she gets to solve problems she uncovers,” she said. “She has become much stronger, more patient, compassionate and self-sufficient in the face of her health challenges.”

Maddy Gross added that she hopes the campaign catches on across America and that the million people who have POTS feel less alone or weird for it because of the supportive community that the campaign creates.

“Every time I get a new picture sent in, it’s like Christmas for me.” she said. “It means so much more to me than I can explain.”

Already, her efforts have made a direct impact on lives. Multiple people have contacted Gross to ask about POTS — questioning whether they or their friend may have it.

“I hope I’ve made people feel a little less self-conscious about having to advocate for their own needs,” she said, “Even if they seem odd from an outsider’s perspective.”

Gross hopes to sustain the campaign as long as people continue sharing photos, stories and comments. She added, though, that even if nobody did, she would find another way to raise awareness — another reflection of her relentless passion and desire to make an impact on social discourse surrounding POTS.

Her self-advocacy and determination to make a universal difference while battling her own illness has inspired many of her peers.

“Maddy once told me that she wished Dr. House from the show ‘House’ was real life so that he could figure out what was wrong with her,” Campbell said. “With Maddy’s campaign, I feel like she is Dr. House for a lot of people.”

People from all across the nation have been sharing their unique #LegsUpForPOTS photos with the campaign in hopes to promote dialogue about POTS. Photo courtesy of Maddy Gross.

Community support builds

After feeling light-headed during her Global Experience class in Colonnades, Gross frantically searched for a place to raise her legs. Luckily, her classroom’s attached kitchen provided her with a space to attend to the situation, away from possible judgmental glances from her peers.

Beth Jennings, a program assistant in Colonnades, saw her lying down and approached her, asking her to move in order to avoid a situation where she would get stepped on.

Gross attempted to explain to her that she wouldn’t be able to move without fainting but Jennings insisted, concerned for her safety.

“We both wanted me to be safe, but she couldn’t understand my way of getting to that,” Gross said. “As someone who is chronically ill, I have a different view and knowledge of how I have to get to safety and health, so I knew I couldn’t move.”

Citing the incident, Campbell added that the community could improve in its support for chronic illnesses such as POTS.

“I do not think the Elon community is that accepting of POTS simply because they are not educated enough,” she said. “This situation made me really annoyed and pissed off for Maddy. When she has to put her legs up, she has to put her legs up and the Elon community needs to be more understanding and educated about her illness.”

Gross stressed that no hard feelings were directed towards Jennings or the situation. The event, to her, only represents the need to spread further awareness within the general public.

Gross said by and large, Elon, especially its professors, have been incredibly accepting of her. Whether it be on her way to class or during a Global Neighborhood House dinner in front of more than 100 people, Gross has had to “drain her legs” around large groups of people on countless occasions.

“I’ve even put my legs up on the grass right next to Inman with a friend holding my legs up for me, and no one walking to class really gave it a second look,” she added. “If people walk by and I catch them looking, I usually just give them a thumbs up so they know I’m okay.”

The university is also the first place she ever met other people with POTS. Her multiple friends and Kappa Delta sorority sisters with the same diagnosis, serve as constant motivators and sources of support.

Reaching for the skies

Though there were many moments during her first semester when she was close to withdrawing for medical reasons, Gross is determined to continue searching for more ways to help others in similar positions.

Turning every sacrifice into an opportunity, she is motivated to create a foundation at Elon to support the continuation of  her work with spreading awareness. 

She changed her major from music production, as her illness impacted her ability to sing, to undecided — hoping to find a major that would allow her to further her POTS advocacy.

“I wouldn’t want to be any place except Elon,” Gross said, “and I’ll jump through any health obstacles to stay here.”

While she is uncertain on whether she will choose POTS advocacy as her primary career path, she is sure that helping the cause is already an ingrained  passion that she plans to continue to nurture.

In the future, she hopes to also advocate for those belonging to other chronic illnesses, particularly “invisible ones” or diagnoses that are less heard of in medical discourse and whose patients feel alienated.

Gross urges the Elon community to realize that it’s harder to live with POTS than a quick Google search of it might suggest.

“Everyone’s symptoms [and experiences] are a little different,” she said. “All you can find on the Internet is stuff about how our heart rate increases too much when we change positions — which is true, and is the defining symptom — but we deal with much more than that.”

The isolation and stigma of being constantly sick can also lead to depression and anxiety among POTS patients — making a supportive network increasingly important.

Just last week, Clara Ballou, a sophomore at Elon, posted on the Facebook page, sharing her own journey towards a POTS diagnosis.

Ballou learned of POTS after hearing senior Tessa Kroninger speak about her own experience with the syndrome during ElonTHON last year.

Realizing Kroninger’s story mirrored her symptoms, she approached a doctor and after five-and-a-half-years of remaining undiagnosed, her symptoms could finally be treated.

“I never thought I would get a driver’s license, graduate high school, or attend college,” she wrote. “I know I’ll never be cured, but having people like Maddy and Tessa make this journey a lot easier.”

To Gross, these instances of community outreach and discourse represent one of the major reasons why she pursued the campaign in the first place.

“The best part has been having friends, acquaintances, and even strangers open up to me and tell me about their journey to diagnosis and where they plan to go from there,’” she said. “I support them 1,000 percent.”

She also shared that many people, combatting other chronic illnesses, have approached her with ideas for their own awareness campaigns.

“Seeing Legs Up For POTS’ direct impact is such a huge motivator for me to continue my work,” she added. “I’m so excited  for it to grow.”

With her feet often stretching toward the skies and her goals reaching even further, Gross wants those dealing with chronic illnesses to know that they are never navigating through their journeys alone.

“Don’t be afraid to do or ask for what you need to stay healthy,” she said. “Whatever that may be.”

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