“As much as I know fragrance means a lot to other people, it does to me, too,” Harrup continues. “I really miss enjoying scents.” Even more than missing the fragrances themselves, Harrup says, she misses her social life. Besides her friend Becca, who always showers with unscented products before coming over, few people in her life are willing to make the effort it takes to spend time with her. “I’m an extrovert, and I used to love crowds and concerts and going to dances,” says Harrup. “Now, I get a panic attack if I go to a book club because I don’t know what I’m going to be walking into, and I don’t feel like I have the right to say anything about it there in the moment.”
One alternative source of community has been Instagram. Harrup’s page, @rebellious_story, is where she shares everything from health updates to book reviews. And she’s not the only one. For Liv, 27, an esthetician known on Instagram as @chronicallyhillandhot, posting about her symptoms was actually what led to her MCAS diagnosis. While she says that in hindsight, there were signs of MCAS growing up, it wasn’t until 2018 that she started to experience serious health issues. She was initially misdiagnosed with rheumatoid arthritis and fibromyalgia, and for a while, she controlled her symptoms by taking antihistamines. But by 2022, nothing was working anymore. “They had tried, it seemed like, everything, years prior,” says Liv, who prefers not to share her full name. Her tonsils had been taken out; she’d had her esophagus stretched three times in a year. And still, her throat tightness persisted. That year, when her symptoms began to worsen again, she started to post about them. “I started my page as a combo of trying to joke and cope,” she says.
Online, Liv posted about her mysterious symptoms and her visits to the ER, and as her following grew, the comments she started to receive often referenced MCAS. “I went back to my allergist. I asked about it, thinking it was a long shot or too rare, but it was as if a lightbulb went on in her eyes,” she says. After being treated for suspected MCAS and referred to an immunologist, Liv experienced real relief for the first time. “The first time I met the immunologist, I felt so understood,” she says. “Every seemingly crazy symptom I had ended up having real explanations. So my social media saw me, in real time, go from misdiagnosed and incredibly sick to properly diagnosed and, in many ways, better than I’ve been in years.” Like Harrup, Liv always wears a mask in public. She has stopped using fragranced items on herself, and largely uses fragrance-free in her work as an esthetician.
When asking friends to wear unscented products, or trying to confirm a hotel doesn’t use fragrance in its lobby or rooms, Liv has often been met with skepticism. “I try to give people as much grace as possible,” she says. “Places tend to take it as a joke or think you’re being over the top, or that you’re super holistic or into organic things, which is fine, but that’s not the case.” While medication has helped to greatly reduce the severity of her reactions, she still has to be careful; even hugging someone wearing a lot of perfume can result in throat itching, hives, or a rash.
