Seven years ago, Jaquie Beckwith met her husband Judd in a church near Orlando, Florida. She was 14 going on 15, 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 syndromes, 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.

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 previously vlogging about being in the market for a new formula for her feeding tube, 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.”