Profile Series: Life After Resurrection
Even after an unexpected recovery, Nicole Zaia can't shake off her years living with a terminal illness
There was a time in Nicole Zaia’s life where she went into anaphylaxis so frequently that she had to be on guard for a reaction at all times. She carried an assortment of allergy medications everywhere she went and stayed constantly attuned to her physical state, poised for early signs of a reaction, like flushing or swelling. After all, unlike people with typical anaphylactic allergies, who can link their reactions to specific allergens like peanuts or shrimp, Zaia’s anaphylactic episodes were wildly inconsistent. “When I was at my sickest, I could anaphylax just by sitting around doing nothing,” she says. Once, she suddenly went into anaphylaxis while standing in an open field. “I was touching nothing, eating nothing, drinking nothing,” Zaia says. “Nothing in the environment had changed.”
While many of Zaia’s reactions do have actual triggers, they’re still different from a typical allergic response. On an allergy panel, Zaia’s results are pretty mundane—but in real life, she anaphylaxes at everything from food to mold to the sheer physical impact of falling off a horse. This is because Zaia has a rare blood disorder called systemic mastocytosis, which causes her body to produce too many mast cells, a type of immune cell involved in allergic responses. Her mast cells are also abnormally shaped, making them extremely sensitive. Zaia compares this to a sugar glass, a transparent form of sugar that can be molded to look like glass. “If it’s made to look like a good drinking glass, you pick that up and hold it normally, and it’s going to crash,” she says. “My mast cells, you touch them the wrong way, and they just break down and release all these chemicals into my body.”
Zaia’s symptoms started from birth, when she reacted to breast milk, along with nearly every formula in the store. Then, as a kid, she gradually began developing what seemed like allergies to various foods and medication, before eventually being diagnosed at twenty-four years old. Since this, Zaia has done her best to avoid triggers, removing herself from rooms where she detected the scent of certain perfumes or cleaning products and restricting her diet to avoid certain foods, but this isn’t as easy as it sounds. “There was a long period of time where I was on a feeding tube because there was not a single food I could eat,” Zaia says—and when she began reacting to the feed itself, she had to be placed on total parenteral nutrition (TPN), which delivers nutrients directly into the bloodstream rather than requiring them to pass through the digestive system first.
Having an illness that’s so severe yet so erratic can be confusing to explain to others, especially since most people have no idea what systemic mastocytosis is. Zaia says she was always “the weird kid” growing up, with her classroom doors displaying signs prohibiting the foods she would react to and the mold in her high school forcing her to switch schools mid-year because her reactions were so bad. Even now, she wishes she’d had the option of keeping her allergies concealed from her peers, since this led to relentless bullying.
Zaia hasn’t just faced judgment—the unpredictable nature of her condition has actually made people question its very existence. Most often, it’s not outwardly apparent that Zaia has mastocytosis, even though her condition has at times been so severe that she was considered terminal. Similarly, Zaia’s reactions have always fluctuated wildly. “Sometimes I could physically come in contact with a strawberry and maybe just get itchy or really red,” she says. “But other times, I could be in the same room with somebody eating a strawberry and go into complete anaphylaxis.”
Because of this, Zaia has been accused of inventing allergies for attention by everyone from relatives to the physicians actually treating her. “Even as an adult,” she says, “I’ve had doctors question my diagnosis and say, well, you don’t look that sick.” And Zaia’s medical expertise, which comes both from her personal fascination with science and her background in biomedical research, actually makes this worse. “I've had physicians essentially assume that I was just trying to intellectualize the whole thing,” she explains.
It’s clear from the way Zaia speaks about her illness that she has a strong grasp on not only its biological mechanisms but also the self-advocacy skills required to get treated for it. “I realized very early on that if I didn't make my voice loud, I was going to get overlooked,” she says. This is especially because, as a woman, she’s no stranger to doctors who attribute debilitating symptoms to growing pains or run-of-the-mill menstrual symptoms. “I learned pretty quickly that I had to say, no, this is what I'm feeling, and you need to find out the problem,” Zaia says.
Zaia learned to advocate for herself from watching her mother, a nurse practitioner with an insider knowledge of the healthcare system, interact with her doctors throughout her childhood. Now, Zaia knows how to assert her needs—and also how to stand firm when clinicians try to push back.
In one situation, for example, a nurse informed Zaia that the combination of drugs she was taking wasn’t safe, and, as Zaia explains, “I looked right at her, and I said, I'm sorry. You’ve now overstepped your practice, because you have no right to comment on the safety or efficacy of a medication. You are not a prescriber, and you are certainly not my physician or prescriber.” When the nurse argued that she knew better because of her twenty years as a practitioner, Zaia shot back with, “In those twenty years, how many patients with mastocytosis have you taken care of?”
At this, the nurse fell silent.
“I hate that I have to stand up for myself like that,” Zaia admits, “but it's a very difficult dichotomy, because if I don't advocate for myself, my life is in jeopardy… I just wish people would be more willing to take people’s lived experience as fact.”
Zaia also remembers a nurse from the hospital who refused to listen when Zaia said she had a strong feeling that something was wrong with her. “She completely dismissed me,” says Zaia—until, in the middle of the night, Zaia shot up in bed, unable to breathe. “I could feel my blood pressure just going,” she says, “like, sucking the life out of me.” Her face turning purple, Zaia slammed on an emergency button and a group of nurses flooded in, including the one who’d ignored her earlier concerns. After Zaia was properly treated, this nurse sank to the corner of the bed, sobbing and repeating over and over again that she was sorry. “That was one of the most validating moments in my healthcare experience,” Zaia says—because, most of the time, other people’s disbelief is just something she has to tolerate.
When I interviewed Zaia on a Sunday last April, I’d forgotten it was Easter until she mentioned that she couldn’t get on a Zoom call until she finished Easter dinner with her family. However, despite being baptized and celebrating Christian holidays informally, Zaia an atheist who never related to any of Christianity’s teachings until she was prescribed a GLP-1/GIP drug called Zepbound. While GLP-1s, like Ozempic and Wegovy, are most-known as trendy weight-loss drugs, they also target a cellular pathway called the mTORC-1 pathway, which is key to mast cell survival and growth—and taking Zepbound, Zaia says, has felt like being religiously reborn.
“I haven’t felt this well, or functional, or human, in about twenty years,” she says. “It's almost like it's a life I've been watching on television and wishing I could have. And all of sudden I have it.”
Not only is Zaia no longer terminal, she can now tolerate every food except for strawberries and walnuts. She’s also amazed that she finally has the energy to work all day without pausing for a nap, since, in the past, she could only do a few hours of even lighter work without it completely draining her. “The fact that I can just wake up in the morning and go all day, and then come inside and work at night and feel like I'm not going to die for the next four days… It’s wild,” she says.
Still, it’s possible that Zaia’s treatment could stop working, or that it could provoke severe side effects that are unfeasible to live with. “It’s a nerve-wracking feeling,” says Zaia. “There’s always this niggling in the back of my mind that the other shoe could drop, and there’s nothing I can do about it… I live a little on the edge of like, I’ve got to enjoy every minute, because this could end any second.”
This uncertainty can make it tricky to explain her condition to others. “I think a lot about how I’m going to be perceived,” Zaia says. “I'm extremely well-managed, but I still have a disease… It's hard to explain to people that yes, I'm well now, but I may not be in the future. And I wasn't before.”
After all, she can’t just “go back to normal” when her disease has shaped so much of her life. In many of the horse shows she’s competed in, she was accompanied by a backpack that gave her Benadryl through an IV, while her PhD was mostly completed from a bed in the ICU. Along with this, the instincts formed from years of persistent anaphylaxis are hard to kick. Zaia finds that she’s still wary about what the food around her has touched because cross-contamination was a pressing concern for so long. She also finds herself monitoring her body for signs of oncoming anaphylaxis in situations where it once would’ve occurred—after falling off one of the horses on her farm last summer, Zaia says, she wound up in spiral of panic for days afterwards because of the possibility of a delayed anaphylactic reaction.
But at the same time, Zaia wishes people would ask more about how she’s doing now rather than focusing on her past hardships. “Dealing with people who haven’t had significant illness in their life,” she says, “there’s often a degree of pity that comes with it”—which can create a feeling of otherness.
Zaia recommends that those who have a loved one with a chronic illness “be willing to dive a little deep,” asking questions like what the other person needs, how they’re feeling and if there’s anything they’d like to talk about rather. In her own experience, people make a lot of assumptions: falsely concluding that she’s fine when she doesn’t openly express distress, making efforts to support her without knowing what’s actually helpful. Asking questions, Zaia says, not only eliminates the otherness that comes with chronic illness but also gives back some of the agency serious illness tends to strip away.
“There’ve been times when I’ve needed things that are embarrassing, that are difficult to ask for,” Zaia explains—such as help with bathing herself or changing her clothes. “That takes away a lot of agency, a lot of personal self-actualization and power,” says Zaia, “and there are ways to provide support while still empowering the person you're supporting.”
All in all, Zaia says, she doesn’t want anyone treating her illness as if it’s her entire identity. Even within the chronic illness community, Zaia notices a troubling tendency to lean into the struggles of being ill. “It’s a little bit, of Who’s sicker?” she explains. “I try very hard to never play that game.” When talking about others’ experiences, she doesn’t want people to feel a need to one-up her—nor does she want anyone to feel like they can’t talk about their health issues just because they’re less severe than Zaia’s. “I’m of the opinion that your worst day is your worst day,” Zaia says. “It doesn’t matter if your worst day is someone else’s best day.”
Plus, there’s more to Zaia than her health issues. “I don’t think any of us want to be defined by our illness,” she says. “I want to be defined as Nicole. You know, I have this thing, but it’s not me… It’s not my whole life.”
This was such an empathetic and honest profile. So much resonated with me. Thanks to Nicole for sharing her story.