Down, but never out

Tyler Burrell has an active mind. A voracious reader, she just finished the post-apocalyptic Angelfall series and is about to crack into the fact-based Beneath a Scarlet Sky. A double international affairs and communications major at the University of Georgia, she’d like to enter the security sector to try her hand at intelligence analysis after graduation. And like most 20-year-olds, she feeds her brain plenty of YouTube and Netflix—but only the challenging stuff, like the artful crime drama Breaking Bad (don’t tell her what happens to Walt).

Burrell’s body used to be just as active. She’s had to slow down in recent years, due to a trio of complex chronic illnesses that have affected everything from her joints to her blood pressure to her gastrointestinal tract, making it mighty difficult to undergo any kind of strenuous activity—or even leave the house. "I wouldn’t exactly call my social life thriving," she jokes.

Burrell may be down for the moment, but she’s certainly not out. Despite dealing with a swath of medical issues, ranging from the sorta-pesky to the crazy-painful, she maintains her "optimistic, positive, bubbly outlook on life," she says. Why? "Because it’s just how I’ve always been."

What to know about those with chronic illnesses

Burrell wants to spread awareness—"I’m all about advocacy," she says—so she’s revealing what it’s like to live with the conditions that changed her life and affect so many others. Whether you’re a patient or caregiver, here’s what you need to know about people with chronic illnesses.

#1: They make sacrifices every day

From age 9 to 16, Burrell spent the majority of her days in pools, channeling her inner Natalie Coughlin to swim competitively with the Southern Crescent Aquatic Team, a year-round club near her hometown of Fayetteville, Georgia. She was a natural: "I started one summer and realized I was really good at it, and I never stopped," she says. "All of my best friends were on the team, and we poured our blood, sweat, and tears into it together. It was definitely a huge part of my identity."

During the summer of 2015, she began experiencing a series of joint injuries, starting in her shoulders. An orthopedist attributed the pain to the repetitive nature of swimming; her specialty was the butterfly stroke, after all. Physical therapy helped, but then she dislocated her ankles, wrists, and hips. Before long, symptoms like fatigue, dizziness, and migraines crashed the party. "At that point, I had to stop swimming because my body couldn’t handle it anymore," says Burrell. "I was just in too much pain."

That’s when Burrell and her mom, Heather, realized they’d been looking at each of her injuries as individual ailments—not pieces of a larger puzzle. Soon enough, Burrell would be given her first diagnosis. But despite the clarity that would eventually come, she still hasn’t been able to resume the sport she loves.

"I miss getting in the pool, doing my dives, practicing, and just being in the water," says Burrell. "I’ll be able to get back in at some point, but part of my hesitation is that I know I’ll never be as good as when I was a competitive, top-tier swimmer. It’ll be an interesting mental roadblock to overcome…whenever I get there."

#2: They’re used to people not believing them

Burrell saw doctor after doctor and was given test after test, but they all fed her line after line: Oh, this is just from swimming. You just have loose joints. It’s nothing serious. The worst one? It’s all in your head. Burrell was exhausted and insulted.

"I saw more than a dozen specialists and each time it was so anxiety-inducing," she says. "I feel like I have doctor PTSD from that time period. It was like every time I saw a new doctor, I had to convince them that there was something wrong with me. To go to all these medical professionals who were supposed to have all the answers, and to hear that nothing was wrong, was so discouraging."

Burrell was completely in tune with her body. She knew something was off. Yet everyone wrote her off—which is common in the chronic illness community. "Everyone I’ve talked to with a chronic condition has a similar story going through the process of being diagnosed," says Burrell. "It really goes to show that even people who are genuinely ill can start to doubt themselves because others are telling them that they’re fine. For me, it reached the point where I thought, 'Am I making this up?'"

She wasn’t. In 2016, a rheumatologist in Atlanta referred her to a geneticist at Emory University in Georgia, who gave Burrell her Eureka diagnosis. Turns out her myriad symptoms were the result of Ehlers-Danlos syndromes (EDS), a genetic connective tissue disorder that stems from a lack of collagen in the body. More specifically, she has the "hypermobility" subtype, which typically manifests in spontaneous joint dislocations.

"I had never heard of it before, and by then I was convinced I’d heard of everything," says Burrell. "Finally, it all fell into place."

#3: Finding the right treatment is a very long road

Unfortunately, Burrell soon learned that because EDS is a rare genetic disorder, not a lot of research has been done on it—and therefore, not many proven treatments exist. "EDS affects everyone differently," Burrell says. "Most patients go to physical therapy to strengthen their muscles as much as possible, and I mostly rely on a heating pad to help with my joint pain."

When it comes to treating EDS, it’s really about trying to keep yourself from getting worse, says Burrell. "And that’s been a pretty rocky road for me." It doesn’t help that EDS makes Burrell metabolize pain medications differently—in some cases, not at all. "When I take even heavy-hitting narcotics, I have no reaction to them whatsoever," she says. "I might as well be taking a Tic-Tac."

Complicating matters: Burrell was also diagnosed with postural orthostatic tachycardia syndrome (POTS), another rare condition that affects blood flow and is often a comorbidity with EDS. While some POTS patients take meds to help regulate blood pressure, Burrell didn’t find them effective. Instead, she has learned to rely on twice-weekly intravenous saline infusions via a central line port, which helps her maintain adequate hydration. "They’ve been the biggest help I’ve found so far," she says. "I’m very grateful."

#4: They have good days, bad days, and everything in between

By the fall of 2016, Burrell was able to control the symptoms of both her illnesses well enough to cut it as a freshman at Georgia. "That first year was pretty solid," she says. "Going into my sophomore year, I was confident that I could live on my own and take care of myself."

But in the spring of 2017, Burrell’s symptoms started flaring again. The joint pain from her EDS was becoming too much to bear on a day-to-day basis, and her frequent falls and blackouts (courtesy of POTS) led her to decide to take a medical leave. And as bad luck would have it, that’s when she began having major gastrointestinal issues that went from "kind of weird to very bad, very quickly," she says.

It was one thing after another: "I couldn’t eat anything. It would cause such intense stomach pain. Even most liquids were a no-go. I was living off of 200 calories a day and rapidly losing weight. I was sleeping 24/7 and couldn’t even hold a conversation with anyone, because my brain didn’t have the energy to understand what they were saying."

Burrell’s new symptoms were the byproduct of yet another comorbidity with EDS: gastroparesis, which slows down your stomach’s motility and affects digestion. "I really hit the jackpot with these three things," laughs Burrell. Though she fought against a feeding tube at first, she realized she was running out of options. "I was starving and wasting away. In the end, I simply needed nutrition."

After getting a G-J tube placed in September 2017, Burrell began to heal slowly, but her body soon rejected every run-of-the-mill formula she tried, leading to abdominal bloating, cramping, and general nastiness. "I felt like I was just pumping myself full of food poisoning." She needed to find a better formula, and when she saw another gastroparesis patient rave about Kate Farms’ Peptide 1.5 on Instagram, she wanted in.

Once her nutritionist and doctor signed off on the switch, Burrell felt better from her very first feed. "It has completely changed the game for me," she says. "I haven’t experienced any of the side effects I had from the original formulas. I immediately had more energy and I felt more aware. I can’t believe how well my body has accepted Kate Farms. It’s like it actually wanted to gain nutrition and not reject it."

Burrell still isn’t able to eat many foods, save for the occasional cracker or Nutrition Shake. For the self-admitted foodie, this hasn’t been the easiest transition—"Thanksgiving was pretty tough," she confesses—but she still finds plenty of joy in the social aspect of eating. "My tube hasn’t done anything to prohibit me from sitting down to dinner with my family and friends," she says.

And what comes next? If all goes well, Burrell will be back in Athens for her junior year this fall, "but we’re not really making predictions right now…and that’s okay," she says. "I’m content with waiting however long it takes for my body to turn itself around, whether that’s a few months or a few years. I’m not in a huge rush."

In the meantime, Burrell refuses to let her chronic illnesses win, even during especially tough times. "Yes, you should throw yourself a pity party every now and then," she says, "but whenever life knocks you down, you just have to get up and keep going. Take it one day at a time and always stay smiling. That can make all the difference."