Autoimmune Encephalitis Lived Experience – Tony’s Story

Tony tells his story of his lived experience of autoimmune encephalitis:


Sheesh…now where exactly does one start?

Since September 2012 I’ve told this story to so many people it’s unreal, but I do think that it’s always been for a slightly different audience to what this telling of the tale probably is. Firstly some of the people reading this will actually know what encephalitis is whereas I can pretty confidently say that not one person in all these years has turned round and said “oh..I’ve heard about encephalitis”…not once!

All those who have a story to tell about conditions, diseases etc will have four main parts to talk about and discuss. These will most likely be:

  • What I was like before this happened,
  • What happened?
  • How I dealt with it and what I’m like today
  • What now?

Before all of these events took hold of me, I was a pretty average person…good career, nice family, doing nice things and going to nice places, with loads of nice people. In short though, I was rather ordinary, before these extraordinary events took place.

When it comes to what happened. It was a day, just like any other…sorry, can’t resist the melodramatic start to this!

I came home from work, had a fever for a couple of days, started having convulsions (glad I don’t remember biting my tongue) and was taken into hospital (having punched a paramedic on the way there!). From that point it was really a case of my family insisting that things were worse than what the experts thought until they finally managed to get me in front of the expert who realised how bad it was.

Dr George played a pivotal role from this point on. Once they got me to the hospital for an MRI, and they managed to hold me still in the tube for long enough to get what they needed, it was him who made the diagnosis and told my wife and the rest of my family the gravity of the situation that I was in.

From my point of view, I don’t remember any of this. The first memories that I really have are a mish-mash of being in ward 67 for what seemed like an eternity, having chronic insomnia and a general lack of inhibition over that period; not that I was running about the ward with no clothes on or anything but the nurses in that ward still laugh whenever I drop in all these years later.

Although I was in this battle to stay alive at one point, it was something that I was oblivious to as it was just a case of my immune system fighting my brain, whilst the hospital was trying their hardest to get rid of the parts of my immune system that were causing all the trouble. After a couple of months in hospital, they managed to win the battle that my body was waging against my brain. To continue with rather corny analogies though, my body had won this battle but the war had only just begun. Much like London after the blitz, there was elation that the systematic destruction had ended but what they were left with was a city in ruins that they had to build again as best they could.

Once I was out of hospital I went back to my normal life with my family, friends and work colleagues but it took me year or two to finally realise and come to terms with the fact that I was never going to get back to being the person I had been ever again. In the year or two that followed I was diagnosed with and treated for skin cancer (on my nether regions of all places!) and one benefit I had at this point is that I saw this as simply a drop in the ocean in comparison to the Encephalitis. So I simply took that in my stride and to this day I still make jokes about it with my friends and family. Although on the outside I was being trivial about this, there was method behind my jovial approach as I hoped that it would encourage others to seek help for something that had a stigma attached to it, in particular us blokes who tend not to seek medical help in this area quite as quickly as the better gender might.

With regard to the brain trauma and the recovery process, I had spoken with the consultant about ‘brain plasticity’ (where the brain starts to use other areas to adapt and try to compensate for those that have been damaged) and I do think that this and more practical tools have helped. A strict diary was a key element of this as without it I couldn’t function at all and at one point I would even record meetings and phone calls at work.

It’s now been six years since I was initially diagnosed and so it brings me to the point of what I’m like today. It’s not really what anyone would expect (and certainly what anyone with this condition would like to hear!) but the past year or two have been the most difficult. It’s at this point that I’ve really had to come to terms with the fact that I have to live with ‘this person’ for the rest of my life. Eventually I’ve fully realised that I’m going to be ‘me’ for the rest of my days and sad though it has been to come to terms with, the ‘old me’ that I loved to bits is gone and neither I nor anyone else know or remember him anymore.

It’s not your fault that you can’t keep up the pretence forever and for some reason it’s taken till now for the frustration and anger to kick in. It might take weeks for some, months for others but it’s taken me years for all of these elements to come to a head.

Something that you assume you might avoid is depression. Yes, you might expect to feel down at some points and have to power on through. But it’s the most difficult part to admit to and it’s something that people with all serious illnesses will have to confront. It sounds like I’m finishing on low point but it’s actually the best advice I can give. Doctors, friends and family will (hopefully) hurl all of the medication, support and advice that will help you through most of it, but sometimes it’ll be hard to admit that you have to take it. You won’t conquer this alone, you can’t. Most of all though, I hope you realise….that you don’t have to.

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Page Created: 11 December 2023
Last Modified: 5 July 2024
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