I was 26 when my sister Jane and Peter told us they were expecting their first child together. I was so excited to be an auntie again. Lou was my world, and I couldn’t wait to meet my new niece or nephew. I would imagine what they might look like, who they might be, what kind of little personality they’d have.
Jane was only 22 years old. A mum to a five-year-old, working part-time as a hairdresser, and excited to be pregnant with her second baby her first with Peter. Halfway through her pregnancy, everything changed when she became unwell, and her world was turned completely upside down.
At first, none of us were overly alarmed. Pregnancy can be rough. Viruses come and go. Jane was tough, fiercely independent, and never one to complain. She handled things herself.
Unlike me when I’m ill, I’m straight on the phone to Mum or my sister… even now.
What we didn’t know then was that Jane’s body was fighting something far more dangerous than anyone realised. She appeared to have a shingle like blisters something she had previously had when she was 15.
Shingles is caused by the varicella-zoster virus, the same virus responsible for chickenpox. Once you’ve had chickenpox, the virus stays dormant in your body and can reactivate later in life as shingles. For most people, it’s painful but manageable.
For Jane, it wasn’t.
What no one knew was that the virus had begun to attack her brain.
At first, the changes were subtle forgetfulness, confusion, small shifts in her behaviour. Over time, it became frightening to witness. What we were seeing presented as a mental health crisis. Much of that period is blocked out in my mind now. I went into survival mode, trying to support her and my mum while working long hours.
Growing up, I had always protected my sister. If she was hurt, I would do everything I could to make it better.
But I couldn’t fix this.
Peter was working away in Wales during the week, as he had done since they met, which made everything harder. Jane slept constantly, her body trying to recover and reduce her symptoms. When she was awake, she was disoriented and frightened.
She developed symptoms similar to Tourette’s and OCD. She couldn’t bear people being close to her it was as if electricity was constantly running through her body. They lived by a railway line at this time, which seemed to make things worse.
She would call Peter insisting there were people in the pipes. She lost all sense of time, phoning in the middle of the night asking for washing powder as if it were midday. She smashed tiles from behind the toilet, convinced something was hiding there. She even took her TV apart down to the motherboard, trying to “fix” it.
My mum dropped everything to support Jane and Lou, making sure they were cared for while trying to keep Peter updated. That added an extra level of stress no one needed. Peter would shout down the phone, blaming us for not doing enough. Over time, we came to understand that this was his helplessness. He couldn’t fix it. He couldn’t be there. He needed to work to support them all, especially with a baby on the way, and he couldn’t see another option.
It became a vicious circle and stress only made everything worse.
It was heart-breaking, confusing, and frightening for all of us, including Peter’s family. Peter would call in the middle of the night, desperate, shouting down the phone begging us to go and check on her because she wasn’t making sense or he couldn’t get hold of her. Waking her was difficult when she slept, it was like she was unconscious. We now know that was her brain battling severe inflammation.
We knew something was terribly wrong.
But we were helpless.
We all coped differently. We shielded people from the full reality because we didn’t even understand it ourselves. Every day looked different. We found ourselves taking things out on each other, trauma-dumping, which slowly turned into resentment.
The Diagnosis That Took Too Long
After countless A&E visits, hospital admissions, and endless tests, Jane was finally diagnosed with encephalitis a rare but life-threatening condition that causes inflammation of the brain.
Those early months and years can’t be fully captured in words. Mum travelled with Jane to appointment after appointment, hoping each time for answers. Instead, they experienced dismissal and confusion, resulting in what I now recognise as medical PTSD.
Jane saw multiple neurologists, desperate not only for answers but for help managing her condition so she could regain some of who she was before. She was trying to get better not just for herself, but so she could be present for Lou and her new baby girl, who she adored.
She was perfect.
Encephalitis can be caused by infection such as viruses like shingles or when the immune system mistakenly attacks the brain (autoimmune encephalitis). It can come on rapidly and requires urgent treatment.
Back then, awareness was painfully limited. Over the last couple of years, I’ve learned that many people with encephalitis were wrongly sectioned or misdiagnosed because so little was understood. Accounts like @luuudaw on Instagram help shed light on the reality but remember, people only show you what they choose to show.
Common symptoms of encephalitis include:
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Fever, headache, and confusion
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Personality or behavioural changes
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Seizures
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Speech difficulties
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Memory problems
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Drowsiness or loss of consciousness
It can affect anyone. During pregnancy, when the immune system behaves differently, the risks can be even greater.
Jane underwent MRI scans, lumbar punctures (spinal taps), and EEGs to measure her brain activity. By the time her diagnosis was confirmed, her body was in constant motion. She was “fitting” without being on the floor, drenched in sweat, and bruised from bumping into things.
She was put on steroids to try to manage the condition, but we later discovered these should never have been given long-term without monitoring. She trusted the experts. Doctors are meant to make you better, aren’t they?
Instead, she developed renal failure and now lives with lifelong medication.
We were so exhausted and beaten down that we didn’t have the fight left to challenge the system. Jane had no choice but to accept what had happened. I will write more about how system after system failed her in another blog.
Treatment for encephalitis may include:
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Antiviral medication
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Immunotherapy
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Steroids to reduce inflammation (short-term and monitored)
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Rehabilitation such as physiotherapy, speech therapy, and occupational therapy
The Reality of Recovery
Recovery from encephalitis is unpredictable. Some people recover fully. Others live with long-term effects known as acquired brain injury (ABI).
For Jane, the first ten years were not recovery they were survival.
She lived with exhaustion, confusion, and frustration. She fought an invisible war every day. In public, people mistook her for being drunk when she spoke or walked, something my mum found incredibly difficult to accept in the beginning.
The hospital appointments were relentless. Long journeys. Expensive travel. Endless waiting rooms. Repeated disappointment.
Mum and Jane took photos of the recurring shingles outbreaks, only to be told, “That doesn’t look like it.” The rash would return every few weeks for years.
Even now, Mum cries when she talks about those appointments the hope, the dismissal, coming home with nothing changed.
Encephalitis didn’t just change Jane’s life.
It changed the life she wanted for her children, her relationship with Peter, and our entire family’s life.
We became carers. And with that came shifts in roles and dynamics that have left a lasting impact on our relationships.
Why Awareness Matters
Before Jane, none of us had ever heard of encephalitis. Now I can’t hear the word without thinking of my warrior sister.
Encephalitis can strike anyone, at any age. It can follow viruses like shingles, herpes, or measles, or occur when the immune system attacks the brain.
If you ever see someone showing sudden confusion, unusual behaviour, seizures, or personality changes especially after a viral illness seek medical help immediately. Time matters.
Jane’s journey has taught us that sometimes survival is strength, and that you can’t judge anyone unless you’ve walked in their shoes.
I’m sharing this because it’s a huge part of our story.
And because without understanding the battles someone has faced, you can never truly see the battles they have won.