In sickness and in health

Seven years ago, Jaquie Beckwith met her husband Judd in a church near Orlando, Florida. She was 14, he was 16, and the teenagers began dating on June 12, 2011. A few months later, everything changed.

Jaquie has a rare form of mitochondrial disease, a genetic mutation that only one other person in the world has. Because the mitochondria are crucial to cell function, Jaquie has more than eight chronic illnesses, including Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), and gastroparesis. When she hit puberty shortly after her and Judd got together, Jaquie began having serious gastric issues, seizures, and narcolepsy. She left her high school and took classes from home and hospital beds.

Jaquie liked Judd, but she worried her new normal was more than he had bargained for. "I gave him an out," Jaquie says. "I said, 'You know you’re only 16, you didn’t sign up for this. You can leave if you want.'" Judd said no way, and the couple married last summer.

Lessons from Chronically Jaquie

In March 2016, Jaquie started the YouTube channel Chronically Jaquie, originally to show viewers how she trained her service dog, a golden retriever named Harlow. Two years and 12 million views later, the channel has blossomed into a series of daily vlogs about Jaquie and Judd’s life: the gleeful date nights, the time her feeding tube slipped out and dripped formula onto Harlow during the night, the scary pre-surgery days, and the public allergic reactions. It’s all there, and 96,000 subscribers tune in to share in the experience.

"Chronic illness can vary in how it affects you, from hour to hour," Jaquie says. "There’s just a lot of people out there who believe if you can’t see why someone is ill, then they’re not ill." Some days, she can walk around unassisted; others days, she needs a wheelchair. The average person doesn’t normally see people like Jaquie waking up to breathing treatments, pills, and feeding tube maintenance, and that’s what she’s trying to change. She hopes to foster understanding and encourage research to ultimately find a cure.

At 21, Jaquie has more experience navigating doctors and treatment strategies than most people twice her age. Through her life’s ups and downs, she’s learned three major lessons about living with invisible illnesses.

Lesson #1: Be your own biggest advocate

Although mitochondrial disease is the underlying cause of her chronic illnesses, Jaquie spent years with a myriad of doctors before she got the diagnosis. Every time she sees a new physician, she has to explain the evolution of her symptoms from the beginning, with varying levels of success.

"I’m actually very nervous when I see a new doctor because I’ve been turned away by so many," Jaquie says. "The nice way they say it is, 'I’m sorry, but you’ve breached my level of expertise.' The not-so-nice-way they say it is, 'I have no idea what to do with you, your health is a conundrum, and you need to see somebody else.'"

If Jaquie does get a referral, it’s usually to a big hospital hours away. With a driving restriction of 20 minutes per trip, Jaquie relies on others for rides. Over time, she’s learned to speak up for herself to get the care, medication, and nutrition she needs.

In September 2017, after watching a vlog about being in the market for a new feeding tube formula, one Chronically Jaquie viewer reached out to Kate Farms and directed the company to Jaquie’s channel. She needed to switch formulas because her old formula was giving her gastrointestinal distress and her body was having trouble absorbing it, and soon, she was mailed enough free Kate Farms Peptide Plus formula to hold her over until her insurance began covering it.

"It’s like a miracle formula for me," Jaquie says. "The transition has been awesome." The formula helped Jaquie reach her goal weight, and her success with managing her own illnesses has inspired her to consider a career in patient advocacy. "My biggest advice to people would be to be your own biggest advocate," she says. "No one is going to advocate for you like you will."

Lesson #2: Different doesn’t mean worse

Jaquie’s life is marked by change. She was born in London; her father built high-end resorts for a living, so she spent her first three years in Indonesia and India. She split her grade school years between classrooms in the Caribbean island of Anguilla, Nevada, and central Florida. She enrolled in college to major in communications, then had to medically withdraw for a whole year. Now, she’s taking classes online. On multiple occasions, Judd has saved her life when she can’t administer her own medication during sudden bouts of anaphylaxis.

"When I got sick, I was just kind of learning who I was as a person," Jaquie says. "Nobody wants to be unhealthy or have chronic illnesses, but they’ve definitely made me stronger." She says it’s taught her to be grateful for the smallest of things, and that her stubborn personality keeps her from letting her health hold her back.

If she could go back in time to meet her scared, rapidly changing 16-year-old self, she’d offer a word of reassurance. "I’d say, 'don’t worry, at 21, you’re still alive,'" Jaquie says. "Because there were some times that were really, really scary. I would tell myself that different doesn’t mean worse. My life turned out different than I had hoped and expected, but that doesn’t mean it’s worse."

Lesson #3: Honesty brings people closer

Jaquie hadn’t intended to focus the camera on herself when she created Chronically Jaquie. Rather, her Instagram followers asked her to start vlogging; they wanted to go past stills and short videos to see Jaquie and Judd’s raw daily experience. Not knowing what a vlog even was, Jaquie pronounced it "v-log" in the first videos.

Nowadays, Jaquie and Judd share everything. They want to break down stigmas about living with chronic illness and show people with similar conditions that the medical jargon and equipment aren’t so intimidating after all. "Getting a feeding tube can be kind of scary," Jaquie says. "So I have a feeding tube playlist, so when viewers look through all of what it entails, it can help with some of those fears and worries."

Reassuring paragraphs and discussions of symptoms and treatments fill the comments section of each Chronically Jaquie clip, and Jaquie responds to as many viewer questions as she can. "I really like hearing other people’s stories," Jaquie says. "And getting awareness out there, because there’s a real lack of awareness for some of the illnesses I battle: chronic illnesses in general, service dogs, the whole 'you don’t look sick' stigma."

The words "keep moving forward" adorn each of Jaquie’s clips. It’s more than a catchy intro; it’s her life motto. "Because even though I have poor health," she says. "I still have a really happy life."

It was brought to our attention that Jaquie passed away suddenly in April, 2019. Our thoughts and condolences go out to her family and loved ones.