At the time Lisa Giuffre opened her letter from Not Alone Notes, she said her obsessive-compulsive disorder [OCD] was on the brink of becoming disabling. She's long had a fear of developing food allergies, which has at times limited what she can eat to a very small pool — though she said she's never had a real allergy.
In 2019, she'd just returned to college after the summer break and the letter — from another person with OCD — was waiting in her campus mailbox.
In it, were the words she needed to get started on what she called her “OCD journey.” The handwritten letter encouraged her to start Exposure and Response Prevention [ERP] — a common treatment for OCD in which patients have controlled interactions with obsessions to mitigate compulsive behaviors.
“It said something like, we know how hard it is to face these exposures and do the exposures, and you're really brave for doing this,” she said. In the coming months, she’d pursue treatment with the knowledge that “if other people can do it, and they think I can do it, then maybe I'll give it a try.”
That note came from Morgan Rondinelli of Normal, who has sent handwritten and decorated messages to people with OCD nationwide for the past seven years through Not Alone Notes.
People with OCD have frequent and unwanted thoughts or fears which lead to repetitive behaviors that interfere with daily life, according to the International OCD Foundation.
Rondinelli, who has OCD herself, said she got the idea for the nonprofit during her senior year of college in 2017.
“I put a Google form on my blog just saying like, ‘Hey, if you have OCD give me your address and I'll send you a note, just of encouragement,’ and people started requesting them,” Rondinelli said. “It just was out of my dorm room with a stack of stationery.”
Since Not Alone Notes started, Rondinelli said she and her teammates across the country have sent over 3,000 notes, though she doesn’t know the exact number. She believes she’s written and sent hundreds herself.
An OCD community
Giuffre, of New Jersey, found Rondinelli through the Google Form, and she’s since become one of around 10 people on the Not Alone Notes volunteer team who write letters. She's also the nonprofit's treasurer. Everyone with the nonprofit has OCD or intimate experience with the disorder. Rondinelli said that’s become a requirement for letter writers because they have to understand the circumstances of those they are writing to.
“Our main message, is ‘you're not alone,’ so you have to be able to know what it's like to say that,” she said.
Rondinelli said OCD is often misunderstood. People tend to link the disorder with basic perfectionism. Comments like “I’m so OCD” are made flippantly and intrusive thoughts — a real and sometimes debilitating symptom for people with OCD — became part of a trend on social media in 2023, with people posting jokes about how they were "letting their intrusive thoughts win."
For Rondinelli, intrusive thoughts are part of her everyday life. She said common fears surround the health of her pets and driving. If there’s a small bump in the road, she said she will fixate on it.
“Was that a person?” she said she asks herself. “And then you drive back and you’re like ‘Oh no, it was just like a piece of plastic or whatever.”
In sending snail mail to people who understand these types of behaviors and have similar ones, Rondinelli said she’s built a community of people with OCD. That helped her feel less other as well, she said, and now she gets to keep spreading the message through her nonprofit.
Giuffre and Rondinelli’s co-founder for Not Alone Notes, Molly Fishback, said they’ve both found friends and community through the nonprofit.
“It's funny being friends with someone halfway across the country,” Fishback said. “We've only met a handful of times in person, but we've made it work.”
One of the few times Rondinelli and Fishback see each other is at the annual international OCD conference, which they said they try to attend every year to continue spreading the word about their nonprofit.
History of Not Alone Notes
Not Alone Notes was Rondinelli’s idea, but Fishback reached out to her via social media a few months into the operation to offer her artistic talent by designing cards. Before their connecting, Rondinelli had largely been using store-bought stock cards.
“We have always said that we wouldn't be able to have done a project like this if we didn't have each other,” Fishback said. “She [Morgan] is definitely the writer and I am the artist, and together, we made this happen.”
To get the notes into people’s hands, Fishback first had to get them to Rondinelli. The two have always lived halfway across the country from each other, with Fishback in New York and now the Boston area, and Rondinelli in Normal.
When Google Forms responses came in at the beginning of the operation, Rondinelli said she would include questions to help with the design, such as asking the person’s favorite color. From there, Fishback would decorate the card, and then mail it to Rondinelli, who would write a meaningful message before sending it out to the ultimate recipient.
“Stamps is basically our main equipment,” Rondinelli said.
These days, Rondinelli has started decorating her cards and Fishback has started writing messages — meaning slightly less mailing. With others joining the operation, there are also more hands on deck and the organization has started getting donations of decorated cards.
Not Alone Notes has also started sending care package tote bags for people recently diagnosed with OCD that contain largely donated supplies. Rondinelli said that was the original idea in 2017, but it took time to build traction for that arm of the project to launch. Even now, Rondinelli said she only mail totes out once or twice per year depending on when donations roll in since it can be costly.
Ink as a metaphor
Throughout the nonprofit’s evolution — including becoming an official 501(c)(3) as of 2021 — Rondinelli said basics have remained the same. There have never been typed notes, and Rondinelli said she takes around 20 minutes to write each letter.
“When I write the notes, I picture the hope and encouragement and joy coming through the note itself,” she said. “I kind of think of [it] like sending that through the ink.”
As a recipient, Giuffre said she knows firsthand what that’s like. She said Rondinelli’s passion, friendliness and motivation inspired her to become a note writer.
“It's very nice to know that there's someone out there who cares so much about so many people who, like, she doesn't even know,” Giuffre said. “She started this project to help strangers and that’s just such a beautiful thing.”
Not Alone Notes is a major facet of Rondinelli’s life, but it’s not her full-time job. (She’s a technical assistant at the Normal Public Library.) Everyone in the nonprofit, including the founders, volunteers their time. Rondinelli said the nonprofit is sustained through donations of supplies and monetary donations are used primarily for stamps.
Many people in her life don’t know about the project, Rondinelli said. She’s not doing this for fame or recognition.
“I just write what I would need to hear,” she said.
