‘It’s a long road.’
On July 15, 2025, members of UNC-Chapel Hill’s Health Humanities: An Interdisciplinary Venue for Exploration (HHIVE) Lab were able to speak with Lysa Arthur about her experience living with Ramsay Hunt Syndrome. In this month’s newsletter, we’ll be highlighting Lysa’s story, focusing on her difficult journey to diagnosis and the struggles and successes she’s had living with RHS.
​
What Lysa Arthur thought would be an ordinary business trip to Arkansas in January 2020 would turn into a months-long stay filled with pain, uncertainty, and life-altering realizations—all as a result of Ramsay Hunt Syndrome (RHS). Lysa’s symptoms started on that trip with pain that radiated outward from her jaw, up toward her left ear, and across her face. She initially attributed the pain to an issue with her jaw as a result of her history with TMJ. However, her symptoms had physicians across multiple specialties stumped. Lysa’s other symptoms included vertigo, changes to her hearing, facial paralysis, and a shingles rash. She recalled, “I couldn’t touch my face. I couldn’t brush my hair. I couldn’t lift my hair off my head. I couldn’t chew, I couldn’t see, I couldn’t eat. I mean, nothing. I couldn’t move my mouth. The whole left side of my face was just pain frozen, and my hearing was so amplified. Every little thing sounded like a fire alarm in my head.”
​
After going to see a local dentist and ENT physician who were unable to pinpoint the cause of her symptoms while she was traveling, Lysa was left to resort to the emergency department—not once, not twice, but three times. The first two times, clinicians could not identify a cause for Lysa’s symptoms. She explained, “They did nothing. They said they couldn't find anything. There was nothing wrong.” But there was something wrong. On Sunday, three days after her second visit to the ER, the manager of the hotel where she was staying found Lysa unable to move or get out of bed due to the extent of her pain. She was transported back to the same ER that had sent her home twice before, this time by ambulance.
​
At the hospital, one physician finally began to suspect Lysa had RHS. She recalled, “He touched my face in another area, and I jumped, and he goes, ‘Oh, honey, I think I know what this is. We learned about it in school many years ago, but I’ve never seen it in real life. I think I know what this is.’ And he was right.” Lysa remained in Arkansas for approximately four months until she was stable enough to fly home to Massachusetts. During her five-week hospital admission, Lysa’s doctors worked to find the right combination of drugs to alleviate her symptoms. Still, she quickly realized how foreign RHS was to everyone around her. While some acknowledged they had a lot to learn, others didn’t believe she was sick at all.
These side-by-side images show Lysa’s physical transformation from her early days with RHS to recovery.
Lysa explained that while much has changed in her life, accepting the “new norm” has been key to avoiding depression, although she acknowledges that “there’s nothing normal. Still.” Instead of holding out hope that she was going to recover miraculously and quickly return to her previous way of life, she adapted as she realized how long her road to recovery would be. Working from home and being successful in her business have strengthened her sense of purpose throughout her recovery. Certain accommodations, such as using a swivel chair to prevent her from having to turn her head to the right (which causes her to fall backward) and having family and friends drive her, have also become part of her routine. Lysa shared, “I’m not in pain, and that’s all that matters to me because that pain was, again, I can’t express enough how bad the pain was.” Lysa contrasted her RHS pain with that of her two unmedicated childbirths, stating that the pain from RHS was truly the worst pain she’d ever felt.
​
Being connected to the RHS community, including people like Mike Shoreman and Tanya Rust, has been especially important for Lysa as she’s navigated her journey with RHS. It was only upon joining an RHS Facebook support group that she truly understood the ramifications of her RHS diagnosis, although it took a while for her to understand how long her recovery journey would be. Lysa has also adapted to life with RHS by supporting others. Following her diagnosis, she kept people in the loop about her condition through Facebook and joined RHS Facebook groups. She even offered others support in the form of a weekly drop-in time on Zoom for people to talk with her about their own or a loved one’s RHS.
Lysa wishes that people would talk more openly and honestly about RHS. Even “making a Lifetime movie” about the condition could bring to light how it impacts people. She hopes celebrities with RHS, such as Justin Bieber, will eventually use their platforms to talk about this condition even more. Awareness of RHS is of the utmost importance, especially because the 72-hour window to receive effective first-line treatment is so short. The more people know about RHS, the more people can receive and offer help when the first symptoms present. Lysa tries not to dwell on the fact that her diagnosis took longer than it should have; nevertheless, it remains hard to accept. Still, she shared, “As long as I can get the word out, I’m happy about it. I want the world to understand what RHS is, and I don’t want anybody to have to go through the pain that I went through.”
​
By Tara Penman and Jenny Horton, HHIVE