Beyond Survival: What Life After AE Can Really Look Like

By Juliana Ortiz M.S.

I was 14 years old when I was diagnosed with autoimmune encephalitis (AE). I am now 26, and that experience has shaped much of my life, including my decision to pursue a doctorate in clinical psychology with a focus in neuropsychology.

So, a recent study looking at what life is actually like for people with AE caught my attention.

Rather than focusing only on medical outcomes, the researchers asked people with AE and their carers about their experiences during the illness and in the years that followed. Their stories focused on getting the right medical care, ongoing symptoms, trying to return to everyday life, and the impact AE can have on families.

Getting answers is not always easy

For many of the people in the study, getting the right diagnosis was not straightforward.

Seven of the ten described seeing several healthcare professionals and going through many tests without clear answers. Some were initially treated for other conditions, including psychiatric illnesses or infections, while their health continued to worsen.

Where people received care also seemed to make a difference. Participants generally described better experiences once they reached specialist centres where healthcare professionals had more knowledge and experience with AE.

For the AE community, this is why awareness still matters. For some forms of AE, delays in effective treatment have been linked to poorer long-term outcomes.

Recovery does not always look the way people expect

Every person in the study reported ongoing symptoms that affected everyday life.

Fatigue was the most common, but this was much more than simply feeling tired. Some people described needing far more energy to do things that had once been routine. Others struggled with memory, attention and problem-solving. Half were also living with epilepsy after encephalitis.

These struggles are not always something other people can see. Someone can look well and still have trouble concentrating, remembering things, keeping up with work or study, or having enough energy to get through the day.

That part stayed with me. As an AE survivor who is now training in neuropsychology, I know how complicated the word “recovery” can be. Looking recovered and rebuilding your life after an illness that affected your brain are not necessarily the same thing.

What does going back to “normal” really mean?

All ten participants felt their lives had changed significantly after AE.

People talked about losing independence, becoming more isolated, relationships changing, and no longer feeling like the same person they were before becoming ill. Seven people could not return to work or study, and eight needed day-to-day help with things such as preparing food, cleaning or getting to medical appointments.

The part about identity especially resonated with me. I became ill while I was still growing up and figuring out who I was. Years later, that experience and my recovery became part of the reason I chose to study the brain and pursue neuropsychology.

There is no single version of recovery after AE. For some people, moving forward may also mean adjusting to a life that looks different from the one they had before.

Families live through it too

The study also gave carers a chance to talk about what AE had meant for them.

Some provided emotional support, while others were caring for their loved one around the clock. Many had changed parts of their own lives to provide that care, and some described the effect it had on their own physical or mental wellbeing.

AE may happen to one person, but its impact can reach an entire family. Loved ones can suddenly find themselves becoming carers and advocates while trying to understand a rare illness themselves.

Why these stories matter

This was a small study of ten people in Australia, so these experiences will not reflect everyone living with AE around the world.

But that is also why listening to individual experiences matters.

Research can tell us about symptoms and outcomes. Hearing directly from patients and carers helps us understand what those things can actually look like in someone’s life.

More than a decade after my own diagnosis, I am glad to see research asking not only what happens medically after AE, but what happens to the person afterward. Because surviving the illness is one part of the story. Living after it is another.

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To read the original paper, click here.

For more information on autoimmune encephalitis, click here.