My name is Siw-Iren, I am 50 years old and in October 2017, I was struck by Varicella-zoster virus (VZV) encephalitis.

How it started

I graduated as a nurse in 1999. I have worked as a manager at various municipal nursing homes for about 15 years, and as an assistant department manager in a hospital’s medical ward for 5 years. I am now 100% permanently disabled due to the following event.

The course was as follows: On September 30th, I suddenly developed a severe headache and a fever up to 40°C. I contacted the emergency clinic to ask whether that season’s flu had reached my city. They confirmed that it had, and I accepted that I most likely had the flu.

On the afternoon of October 2nd, my condition worsened and I felt stiffness in my neck. I have psoriatic arthritis and was at that time being treated with an immunosuppressive medication in injection form (which I paused when I became ill). I thought the stiffness might be arthritis in my neck, but it felt different. I also had a red rash on the left side of my chest, which was tender. I called the emergency clinic and got an appointment. A friend drove me there.

Questioning meningitis

I told the doctor that I believed I had meningitis because of my symptoms: high fever, severe headache that didn’t improve with paracetamol, and now neck stiffness. The doctor said I was not stiff-necked and that the pain came from activity in my psoriatic arthritis. He believed the rash must have been caused by flea bites. My CRP (marker for inflammation) were normal, and therefore there was no bacterial infection.

The next day, I went to my doctor because I had now become sensitive to light, which is also a symptom of meningitis. The doctor again concluded that my neck pain was caused by psoriatic arthritis activity and prescribed treatment.

A new diagnosis

Since both doctors I had seen concluded that the cause was psoriatic arthritis, I contacted my manual therapist the following day to get help with my neck. By then I had developed the same rash on my left forehead that I had on my chest two days earlier. The manual therapist suspected temporal arteritis and said the rash was definitely shingles (herpes zoster). He referred me to my rheumatologist, whom I saw the following day.

The rheumatologist ruled out temporal arteritis. I cried from pain and feeling unwell, and begged to be taken seriously. Samples were taken from the rash, and the rheumatologist agreed that this was likely shingles and that I should contact my doctor for antiviral treatment. I did, and started on treatment the same day.

I felt a bit better on October 6th. I had been taking the medications prescribed by the doctor. However, on the morning of October 7th, I woke up with even stronger head pain, and I gradually lost partial ability to speak. I also couldn’t walk properly without support. My son called the emergency clinic, and they sent an ambulance.

I was taken directly to the emergency department. I remember being frightened—I understood that this was very serious. I knew I had been right all week! I had meningitis, but no one except my manual therapist had taken me seriously. In the medical notes from the emergency department, it states that I was very confused and restless. Clearly cognitively affected, with expressive aphasia.

I remember wanting to call my son, and I tried to ask the person looking after me if they could get my phone from my jacket. All I managed to say was “there, there, there” while pointing at my jacket, repeating my son’s name. It was horrific being unable to speak while partly understanding the seriousness of the situation.

They performed a lumbar puncture. Based on my symptoms and the rash on my chest and head, they immediately suspected Varicella-zoster virus encephalitis. They started treatment for this right away, in addition to bacterial treatment just in case. I was placed in isolation in the intensive care unit and stayed there for a few days before being moved to a medical ward. It was eventually confirmed that my spinal fluid contained varicella-zoster virus, and the diagnosis was meningitis and varicella-zoster virus encephalitis. I stayed in the hospital for a total of 11 days, was discharged with further oral treatment, and placed on sick leave.

After effects

No one could tell me what physical challenges I could expect afterwards. I was told that I would likely have headaches for some time and that I should not consider studying or working again until after New Year.

What followed was a long rehabilitation phase that I had no understanding of at the time. It took me a week to manage a few steps of a staircase without falling from dizziness. I was unable to do household chores for many weeks, nor could I shop for groceries or cook. My son and my parents helped with everything for a long period. No one told me that I would sleep up to 17 hours a day, or that fatigue could be a long-term issue after such an illness.

After New Year, I gradually attempted to return to my job as a nursing home department manager. I started with a 5% position and increased slowly. I had been working on a master’s degree in clinical nursing when I became ill. I had to request a postponement. I had no chance of concentrating on it in the state my brain was in. The thesis has never been completed due to the health problems caused by the encephalitis. I gradually returned to a full-time position, but repeatedly needed sick leave. On average, I worked about 50% from 2018 to August 2020. Still, I had very little energy after work or during weekends. I did not have a dignified life in that state. I was constantly exhausted, and I noticed significant struggles with concentration and memory. I underwent several neuropsychological tests, which concluded that I had difficulty maintaining concentration after 15 minutes of work.

Based on this, and given that I have psoriatic arthritis—which is often triggered by stress and causes pain—combined with fatigue that worsens due to stress and pain, it was concluded after several weeks of vocational rehabilitation, including additional testing, that I have no lasting work capacity, and I was granted 100% disability benefits.

In a way, this was a relief because I was exhausted from being required to attempt work that I couldn’t manage. I finally got some peace.

I thought that I would return to work once my condition improved. But I also experienced a deep identity crisis from being outside the workforce. I had always worked at least full-time, mostly in leadership roles, and I had planned to become a university lecturer—hence the master’s degree in clinical nursing. But that’s not how things turned out.

I had to learn energy management. I had to create new meaning in my days while everyone else was at work. I filed a claim with the Norwegian Patient Compensation system because I believed my doctor’s treatment had been insufficient and contributed to the progression to encephalitis. After three years, I won the case and received a small compensation. The most important thing was being heard and validated.

Because of my psoriatic arthritis, I have experimented with different diets to find what gives me the best functioning and allows me to be more active. This has turned out to be low-carb and ketogenic diets. I also notice a significant effect on my brain—I think more clearly and have more energy and capacity. I’m currently working on this, combined with increased physical activity to strengthen my body.

I am still not in permanent employment, though I have tried some teaching work, but it is too overwhelming for my brain due to the noise. I have some ideas about what I might try next. Hopefully, I will eventually be able to re-enter a work environment—that would be fantastic!

 

Siw-Iren’s story is translated from Norwegian. Read the original version here.

Story published February 2026