Woman, 29, Shares Her Encephalitis Recovery Struggle: ‘You Have to Learn This Whole New Person’ (Exclusive)

**Alice Simpson’s Journey: Life After Encephalitis**

Alice Simpson, a 29-year-old woman from Belfast, has recently opened up about her arduous journey of recovery from encephalitis, a condition that inflames the brain. Now two years on from her diagnosis, she describes the process as painfully slow and likens her current situation to being a teenager once again.

Simpson, who was juggling a full-time job, regular gym visits, and the excitement of training a new dog, began experiencing troubling symptoms while visiting her grandparents in England in 2024. What started as a seemingly innocuous earache escalated into a seizure, marking the onset of a life-altering struggle.

Her mother, Deborah, recounts the harrowing experience that followed. “Once she had the first seizure, we got home briefly, but she actually had another,” she explains. “Once we got back to hospital the second time, that was it for three months.” This would lead to a lengthy hospital stay, where Alice spent three months receiving treatment for anti-NMDA receptor autoimmune encephalitis.

In the early stages of her treatment, Alice was administered anti-seizure medications, which unfortunately induced unpleasant side effects. Deborah recalls, “She was very unsettled and almost aggressive — a total change in personality.” This severe reaction prompted doctors to sedate her for her own safety. As a result, Alice spent seven weeks in the intensive care unit (ICU) before transitioning to a neurology ward for further recovery.

Encephalitis can stem from various causes, such as infections or autoimmunity, where the immune system mistakenly attacks the brain. For Alice, the road to recovery was fraught with challenges. During her time in the neurology ward, she faced immense difficulties: “She couldn’t speak, she couldn’t walk, she couldn’t really communicate,” Deborah shares. Their interactions during this time involved simple games and the use of a whiteboard to facilitate basic communication.

Despite her progress, Alice acknowledges that her situation remains dire. She is still unable to return to work, as the medications have compromised her immune system, making it unsafe for her to drive. “I’ve lost all my independence,” she admits. “I feel like I’m back being a teenager again, being in my family home where I should be out living my life like a grown-up.”

The physical effects of encephalitis are just one aspect of Alice’s battle. The psychological impact has also been significant; she has grappled with changes in her sense of self and her mental health, compounded by weight fluctuations due to medication. “You’re working so hard, and you’re not where you want to be, and you’re not back to yourself,” Alice reflects. “You have to learn this whole new person.”

Alice also notes that the visible absence of a wheelchair or other physical ailments may lead others to underestimate her ongoing struggles. “Because people don’t see you in a wheelchair anymore, or don’t see you with a physical ailment, they think you’re okay when that’s not the case,” she explains. Deborah echoes this sentiment, stating, “Sometimes Alice looks completely well, but people don’t see the emotional breakdowns when she’s fatigued or the frustration when she can’t do things.”

As she navigates her recovery, Alice has found solace in sharing her experiences on Instagram, where she frequently engages with others who are also coping with similar challenges. Many reach out to her for support and guidance during their own journeys. Reflecting on her path, Alice advises those recovering from encephalitis to take it one day at a time. “The change in routine and life not being as it was is hard,” she says, “In two years, if my life’s back to normal and I’m driving and working again, then I’d feel happier.”

With Alice Simpson’s story, we are reminded of the silent battles faced by many in recovery from invisible ailments. Her resilience in the face of adversity serves as a poignant reminder of the importance of understanding and support for those on the road to healing. As she continues to navigate her journey, Alice’s message resonates: recovery may be slow, but it is a testament to the strength of the human spirit.