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The Top Instagram-azing Patient Leader: Paige Rawl

Instagram – The New Frontier?

If you think that Instagram is just for sharing selfies and pictures of cute puppies, you’ve got another thing coming. Instagram is being used more and more by companies – and by people whom others deem influential in their own decision-making. WEGO Health is fortunate to have some of the Top Instagram Patient Leaders in our network.

Instagram Fun Facts

But, before we introduce you to one of our amazing Top Instagram Patient Leaders who is having a huge impact on others through her advocacy on Instagram, let’s take a quick look at some statistics that might have you thinking about including an Instagram presence in your promotional plan – if it’s not there already.

In her article, 16 Statistics to Show Why Instagram Marketing is Crucial, Cassie Bendall shares the following statistics:

Pretty impressive, right? So, it’s little wonder that WEGO Health has recognized the importance of a presence on Instagram and how it can impact the lives of the patient community.

 

Paige Rawl: She’s the Real Deal

Meet Paige Rawl, the winner of the 2017 WEGO Health Award for Best in Show: Instagram (although she was also nominated for the Patient Leader Hero Award, because she’s that awesome). Paige (who can be found @paigerawl) is a twenty-three-year-old woman who was born under somewhat unusual circumstances: her mother, unknowing of her own diagnosis, passed HIV onto baby Paige during birth. Paige did not know until she was eleven that she’d contracted HIV and, even then, did not understand the severity; she regarded the treatment similarly to her asthma.

Best in Show: Instagram Winner Paige Rawl

 

By the time Paige was twelve, she finally confided in a close friend her HIV-positive status. Two weeks later, the entire middle school knew and responded with bullying the newly-dubbed “PAIDS.” The consistent bullying that ensued forced Paige to withdraw from school due to stress-induced seizures and almost forced her to end her own life. However, these obstacles did not keep this young woman down for long, and she chose to live a positive life despite being HIV-positive.

Paige: The Early Days

Paige first began her introduction into advocacy after attending Project Kindle, a camp for HIV- and AIDS-impacted youth where she was able to get her first exposure to peers going through the same challenges of acceptance and alienation with their condition. She saw the need for increased education as the most important way to combat these issues and other instances of bullying for children, teens, and young adults with chronic illnesses. Paige then took it upon herself to become the youngest ever Red Cross-Certified HIV/AIDS Educator at just age fourteen. She has since toured the nation, speaking on behalf of this organization and others focused on diminishing stigmas of HIV/AIDS, sexual health and safety, mental health, and bullying.

Paige, who had previously been doing pageants since age eight, ended her hiatus and returned to the scene with a platform of HIV/AIDS advocacy and education, wherein she was crowned Miss Indiana Teen Essence 2011 and Miss Indiana High School America 2012. Paige’s advocacy also took her to the Indiana General Assembly where she successfully lobbied for anti-bullying legislation via House Bill 1423, which was signed into law in May of 2013. That year, she was also a finalist for Seventeen Magazine’s “Pretty Amazing” contest, which honors young women who are making a difference and being “pretty” inside and out. Since then, she has received numerous other awards and accolades, but to list them all would warrant another blog post of its own.

 

Written when Paige was just 19, Positive has become a #1 best seller on Amazon – source

 

Paige’s memoir, Positive, has received resoundingly positive reviews on Amazon.com. For example, user Bonnie Marsh states in a fashion directly related to her social media presence, “Paige spells all this out so beautifully – how she went from her darkest days to sunshine. I’m so grateful to her for putting this experience into words for the world.”

Jay Asher, author of the book-turned-Netflix-series Thirteen Reasons Why, even wrote a foreword for the book after a Teenreads.com interview where she mentioned his novel as a favorite of hers growing up. In 2014, the same year her book was released, she was featured in the documentary It’s Not Over, which chronicled the lives of three HIV/AIDS-impacted young adults (and, as I needed to find out, is also available on Amazon Prime video, in case you wanted to join me on my plans this weekend).

Her Advocacy Continues

But even with all this success before she was even allowed a legal drink, Paige is not retiring from her role as a Patient Leader and advocate any time soon. As she stated in an interview with POZ Magazine, “I know firsthand that there are still big misconceptions out there about how you can and cannot contract HIV. [We need] more education among youth in the U.S., and there should be more support groups. Youth need to see themselves reflected in what’s taught, in the information they are given.” Continuing on this path, Paige is currently attending Ball State University and working to become an HIV/AIDS researcher and start her own foundation for both anti-bullying and HIV education.

And for all of the middle school bullies, I bet you’re not friends with @mileycyrus. #sorrynotsorry

Paige has now formed a sprawling network of positive peers online who follow her various social media accounts. While her middle school peers were the antithesis of supportive, increased migration of the younger generation(s) onto the Instagram platform could help move negative backlash surrounding the stigma of infectious disease. A report published by Bitescience elaborates that “social media use was related to an increase in cognitive and affective empathy over time: Teens who used social media more frequently had better ability to understand (cognitive empathy) and to share the feelings of their peers (affective empathy).”

 

But That’s Not All, Folks!

Inspirational stories like Paige’s are the reason we choose to honor Patient Leaders taking advantage of this positive story-sharing platform. And, if you’d like to add some additional positive posts to your own Instagram feed, check out some of our other nominees for the Best in Show: Instagram WEGO Health Award!

  • Milena ‘Moon’ Azevedo (@milenamoon) is an endometriosis, fibromyalgia, and mental health patient advocate. However, she is more importantly a force for positivity, whether it be in relation to healthy lifestyle choices, body image, or women’s issues, having created a Facebook group, The Girl Talk as an open dialogue platform for women to discuss the latter. Throughout her pictures of impressive yoga poses, she constantly updates followers on her chronic illness struggles and recently posted this shout-out to her over 31k network: “Thankful for all the love and support everyone on [Instagram] continues to shower me with. It’s not easy to be vulnerable, often times exposing yourself on social media only leaves you open for criticism from people who only see 1% of who you are. But I’m grateful for everyone who’s been a pillar for me on this platform for the last three years.”
  • Shelby Goodrich (@pcos_support_girl) is a moderator of the Facebook group You Can Totally Cyst With Us and blogs at com about PCOS as well as diet, exercise, and healthy living in a raw, no-nonsense way. Here’s just one snippet of her take on social media: “One day you can be funny and witty. One day you can be real and raw. One day you can be filtered, the next fragile. You can literally be whatever you want…It felt encouraging to hear words of adoration and accolades. I was proud of this ‘persona’ I created. She was a bad *ss. She took no sh*t.”
  • Chanel White of The Tubefed Wife (@thetubefedwife) works to constantly raise awareness of rare diseases and chronic conditions, such as the degenerative autoimmune condition she was diagnosed with in her early twenties, though various outlets like The Huffington Post. Chanel says of her online patient community’s support, “I have found an overwhelming strength that I had no idea even existed; without this devastating disease, that strength would have never emerged. I have met and created relationships with some of the most courageous, beautiful, and strong women who walk this earth! They fight this disease with a grace unlike any. I am eternally grateful for my Scleroderma Sisters.”

 

To quote Dr. Helen Riess, Director of the Empathy and Relational Science Program in the Department of Psychiatry at Massachusetts General Hospital and Harvard Medical School, from her TEDx Talk,  “When we empower others, we can collectively come together to be bring our best selves to solve the world’s biggest, smallest, and most vexing problems; that is the power of empathy.”

Paige Rawl, you’re leading the charge. Congratulations again on your WEGO Health Award!


 

This post was written by Corinna Hablig, a loved member of the WEGO Health family, prior to her passing on Feb 15, 2018. Corinna is dearly missed.

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