by Jenny Lelwica Buttaccio
It’s hard to believe we’re already in the new year; chronic illnesses such as Lyme disease, chronic fatigue syndrome, and fibromyalgia can seem like one endless, bumpy road with many twists and turns. One day you’re up, and the next day you’re down. As the years tick by, you begin to wonder if there’s any light ahead on the long path to healing.
If you find yourself feeling weary or burnt out from the challenges of last year, we’d love to spark a renewed sense of hope for the new year by highlighting the changemakers and advocates in the chronic illness community who are inspiring us. From nonprofit organizations to politicians, these people are stepping up from all walks of life to bring about positive change for all of us. Here are our picks for 10 people to watch in 2019.
1. Jamison Hill
In 2010, personal trainer and bodybuilder Jamison Hill experienced an onslaught of symptoms related to ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). By 2015, at what should have been the peak of his career, he was bedridden.
Today, Hill continues to experience challenges with the most basic life skills on a day to day basis — bathing, eating, and talking are hard. But he expresses himself and advocates for people living with chronic illnesses another way: He writes, and his vulnerable personal essays about living with severe ME/CFS have grabbed the attention of thousands of people around the world, as well as The New York Times.
For instance, Hill’s 2018 Times essay, Love Means Never Having to Say … Anything, discusses the unique difficulties of his relationship with his girlfriend, who has similar health issues. One main difference? She can speak, and he can’t due to a debilitating loss of physical strength associated with ME/CFS, yet their judgment-free love binds them together.
With such limited energy, why does Hill spend his reserves on advocating for the ME/CFS and disability communities? He says, “It’s important to me because it always feels like my life is sort of hanging in the balance. Then, I see other people in similar situations, and it only intensifies my urge to raise awareness.”
Hill adds that he often pushes himself to do more than his health allows, causing a cycle of setbacks and slow recovery. “It’s a slippery slope sometimes,” he says. But don’t expect his advocacy work to slow down anytime soon. In addition to his powerful stories on his website, Jamison Writes, and working on his memoir, Hill says, “In 2019, I would like to see more research funding, and some new treatments would be great to see as well.”
2. Karen Whitsett
Karen Whitsett, Michigan’s newly elected State Representative (D) for District 9, has had Lyme disease since she was 5 years old, though she wasn’t officially diagnosed until 2012. After years of debilitating symptoms and experimenting with various treatments, her health improved, and she became a community activist and block-club president of her Detroit neighborhood in 2016. From there, despite still dealing with symptoms like stomach bloating, food sensitivities, and joint swelling, Whitsett knocked on more than 14,000 doors to achieve an overwhelming victory for her seat in the House on November 6th, 2018.
Although many people aren’t exactly familiar with Lyme disease in Detroit, during her campaign, Whitsett used the illness as an example of a pre-existing condition to advocate for health insurance reform. She has bold legislative plans for Michigan in 2019, so be on the lookout for change.
“I would like for doctors to accept health insurance, take Lyme disease seriously, and treat people aggressively. Lyme literacy training is a must for all doctors, and Lyme disease needs to be on the list of disabilities,” says Whitsett.
3. Jenni Grover
In 1997, at the age of 25, Jenni Grover was diagnosed with fibromyalgia. She felt scared and alone — she searched for resources to cope with her chronic illness, but came up empty-handed. Fueled by her desire to provide the types of resources for young women that she wished she had found when she was newly diagnosed, she created ChronicBabe in 2005, a multimedia platform focused on helping others craft amazing lives in spite of illness.
These days, the platform has evolved to address the concerns of all age groups with a sprinkle of Grover’s trademarked sass and attitude. Though she’s been helping others cope with chronic illness for more than 20 years, Grover says there’s still work to be done to change the perception of how patients are viewed by society.
“I still think there is a ton of negative stigma attached to living with chronic illness, especially chronic pain,” she says. “Many people and organizations still associate sick folks with laziness, hypochondria, and other negative concepts. So, we still have to fight to be heard, and to get the care we need and deserve.”
What does 2019 have in store for this ChronicBabe? “I’ll be back on the speaking circuit — I’m booking gigs right now for the first half of 2019. It’s going to be so fun to travel and speak to audiences around the world,” she says.
Follow Jenni and ChronicBabe:
4. Daniel Swanson
Illinois State Representative (R) Daniel Swanson didn’t know much about Lyme disease until one of his constituents, a mother named Jennifer, approached him in 2017 about the challenges she faced when trying to obtain in-state treatment for her 12-year-old daughter, Lauryn. “After hearing Lauryn’s story and struggles, I was driven to see what I could do through legislation or what other avenues might be available to help her,” says Swanson.
He quickly learned that Lauryn’s battle with Lyme wasn’t unique. As he met patient after patient, the stories he heard all shared a common thread: multiple misdiagnoses, inaccurate testing, difficulty finding a local doctor with the knowledge to treat Lyme disease, and the need to travel out-of-state to seek medical care. Swanson realized his journey for improving the lives of Lauryn and other Lyme patients in Illinois was just beginning, out of that, House Bill 4515 was born.
The bill included two parts:
- A Lyme disease task force, which develops educational resources for healthcare professionals and residents and bridges the gap between researchers and state agencies.
- A doctor protection act, which allows physicians to treat Lyme disease without fear of losing their licenses when treating Lyme or other tick-borne diseases.
Along with Swanson, Lyme patients, families, and advocates from across the state worked tirelessly to email their state representatives and senators and educate them on the severity of the illness. In April 2018, HB4515 passed through the Illinois House, only to be vetoed by former governor, Bruce Rauner, in August. Fortunately, all was not said and done. This past November, the Illinois General Assembly unanimously overrode the veto, and The Lauryn Russell Lyme Disease Prevention and Protection Law was passed — named after the young girl who inspired Swanson to pursue the Lyme legislation.
What are Swanson’s goals for 2019? “I would like to see legislation passed providing insurance coverage treatment-wise and adequate funding to support vector-borne testing and research,” he says.
Others legislators may soon follow suit with similar bills. Swanson says he’s already had representatives and residents from other states reach out to him asking for his help to create legislation in their states. “I offered to assist as needed,” he says.
5. Allie Cashel
Allie Cashel is the co-founder and president of Suffering the Silence (STS), a nonprofit aimed at fighting the stigma that surrounds chronic illness. She, along with co-founder and director of communications Erica Lupinacci, teamed up to create this organization to utilize art, media, and storytelling to raise awareness, build relationships, and help others with chronic illnesses and disability share their experiences. They know what it’s like to feel alone — Cashel dealt with chronic Lyme disease for years, and Lupinacci has Lupus — and they wanted to help others avoid those feelings of isolation.
Cashel says, “When we don’t talk about our experience with chronic illness, it makes it harder to access treatment and care, and harder to maintain mental health. I work to raise awareness around the impact and stigma surrounding these illnesses so that people can feel safe enough to speak up about their experiences, to build trust with their loved ones, and ultimately, to get the care and support they need.”
In 2018, STS began production on a new documentary film series, Trust Me, I’m Sick, which was created in partnership with Arlo Pictures. Cashel explains, “This series hopes to challenge perceptions and implications of what it feels and looks like to live with a chronic condition through the unique stories of five individuals.”
Hoping to release the series in 2019, Cashel says this documentary will be one of their biggest projects to date.
Follow Allie and Suffering the Silence:
6 and 7. Dana Parish and Steven E. Phillips, M.D.
In 2017, Steven E. Phillips, M.D, a Yale-trained expert on zoonotic infections (diseases spread between animals and people), teamed up with Sony/ATV songwriter, science journalist, and Lyme patient Dana Parish. Their goal: To create an ongoing series of Facebook Live videos to bring accurate information to those struggling with Lyme disease and other tick-borne infections.
By live-streaming one or two videos a month, the videos grew in popularity throughout 2018, even landing Phillips and Parish a book deal, an opportunity Parish says she never saw coming. Parish believes that the reason the show has increased in viewership is largely due to their mission to help others.
“This is not about us. It’s not some vanity side-project,” says Parish. “Dr. Phillips and I often talk about the greater good, and whether saying or doing something serves that purpose. If the answer is no, we won’t do it. We don’t care about politics, and we aren’t interested in ‘playing the game.’ We deeply care about helping patients.”
In addition to continuing the Facebook Live series and working on the book in 2019, Parish hopes the new year will bring about significant change in the way the government and medical communities view tick-borne diseases. “But they’d have to acknowledge the breadth of the problem, and I don’t think they’re motivated to do that,” she says. “I hope the community can continue to raise private money and find answers to these diseases in the form of diagnostics, better treatments, and affordable care.”
Follow Dr. Phillips and Dana Parish:
Facebook: Dr. Steven Phillips & Dana Parish
YouTube: Lyme book with Dr. Steven Phillips and Dana Parish
8. Puja Bhola Rios
Puja Bhola Rios is a chronic pain advocate who began her blog, Me vs. Fibromyalgia, in April 2016. “When I was first diagnosed, there was not a ‘one-stop-shop’ place for me to get information about living with fibromyalgia,” says Bhola Rios “The blog is my story of living with this crazy and complicated condition, and the purpose was to educate and assist those who suffer every minute of every day and are still expected to live a normal life.”
The chronic pain community has taken note of Bhola Rios’ advocacy and blog, earning her such accolades as Fibro Daily’s #1 Fibro Awareness Advocate, WEGO Health‘s Best Blog and Rookie of the Year finalist, and a presenter at the 2018 HealtheVoices Conference.
“There is no greater reward as a patient advocate than knowing that you helped someone on their journey with fibromyalgia. As an advocate, I have been exposed to so many people fighting so hard to manage this illness. I am constantly reminded that there are many different ways to tackle this illness and still have the ability to have a great life,” Bhola Rios says.
9. Ina Melendez
Entrepreneur and green beauty expert Ina Melendez was diagnosed with Lyme disease in 2014, following years of misdiagnoses and unexplained symptoms. Almost immediately after her diagnosis, she launched a blog (Naturally Ina) and vlog (My Lyme Diary) to combat the isolation she felt. She saw a need to be a lifeline to others, and she decided to fill it.
“I wanted to find a way to connect with others, share my story in an authentic way, and help educate people who have never heard of Lyme,” says Melendez “But mostly, I started blogging and vlogging to inspire other people who are facing similar battles to never give up.”
Melendez isn’t one to let illness stand in the way of achieving her dreams. In 2018, she launched a docuseries project called, But You Don’t Look Sick, which seeks to show what living with Lyme disease really looks like and inspire others to pursue their passions. Though she had to halt production of the project to refocus her fundraising efforts and tend to her health, Melendez assures us that she’ll continue her work in 2019 to bring the project to life.
In the meantime, “I’d like to see people choosing to live more despite pain. I know it’s hard, really freaking hard. It’s hard for me every second of every day. But one thing is for sure — I’ve never regretted pushing myself out of my comfort zone to live!” she says.
10. Amelia Hill
For more than six years, Amelia Hill lived in one room of her parent’s Australian home, separated from her family, friends, and the outside world. Amelia has ME/CFS and MCS (multiple chemical sensitivity), with disabling, life-threatening reactions that are triggered by things that seem innocuous to most people. Everyday items — fragrances, chemicals, laundry detergent, foods — trigger symptoms that have left her bedridden for weeks, months, and even years at a time.
Despite the immense challenges of living in isolation, Hill’s resilience, perseverance, and positive mindset has garnered media attention and captured the hearts of many around the world. In 2014, Hill launched her blog, Amelia Hill, to shine a spotlight on illnesses like ME/CFS and MCS.
“I thought long and hard about the decision to share my story publicly in the media via television, newspaper, website, and podcast interviews, along with my own website and social media,” says Hill. “I’ve also felt a tremendous responsibility to do my best to inspire others facing similar battles. Chronic illness can be an incredibly devastating and debilitating experience. We need to encourage each other; we need to be each other’s greatest support and advocate.”
In 2018, Hill created her first ebook, YOU CAN and YOU WILL. “When I was going through some of the toughest times of my life, when all I felt was left for me to do was give up — I wrote down the words I really needed to hear, and I repeated them to myself over and over again until my inner fighting spirit returned,” she says. Those “pep talks,” as she calls them, became the basis for her ebook, a reminder to others that they have more strength and courage than they realize.
Hill continues to struggle intense symptoms daily, but she now lives in a custom-built, low-toxin home as she works towards recovery. Although she has endured significant hardships, she has big plans for 2019, including a new book about the game-changing lessons she’s learned through illness, a guide to building a healthy home, and an audio series. “Now, all I need is the physical energy to see all these passion projects to completion!” Hill says.
1. Image #3 of Jennie Grover was taken by Alix Kramer
2. Image #9 of Ina Melendez was taken by @whitebalance__