Autoimmune Encephalitis Lived Experience – Philippa’s Story

In July 2023, our world changed forever when my husband suddenly became unwell and was diagnosed with autoimmune encephalitis.
It was terrifying. The uncertainty, the not knowing what each day would bring, was one of the hardest parts.
He spent six long months in hospital, followed by a further eight months in a rehabilitation centre. Those fourteen months were filled with fear, exhaustion, hope, and small victories that meant the world to us. Our story is still continuing and if I’m honest, it’s been nothing short of a rollercoaster.
We’ve both had to grieve what we’ve lost: the life we had before, the routines, the memories, even simple things we used to take for granted. That grief doesn’t go away, it pops up in unexpected ways, every single day. For my husband, memory loss has been a significant challenge. For me, it’s been learning to adjust to a new version of the man I love, while also showing up for him every day, in every way I can.
I take things one day at a time. Sometimes it’s managing a seizure. Other times it’s helping him through confusion or frustration. We cry together when it’s tough and we laugh and act silly when we can. Those light moments mean everything. We treasure them. We need them.
Every day, we say to one another: “We’ve got this.” And somehow, those three words carry us through.
To anyone here caring for someone they love please know this: you are not alone. I understand you. It’s easy to feel forgotten when the focus is on the person you’re caring for. But your strength, your pain, your resilience—it matters. You matter.
Hold on to the moments of laughter. Save them like little lifelines. Because they are what help us through.
Story published September 2025
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