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The Long-Term Effects of Encephalitis We Don’t Talk About

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For as long as I can remember, I’ve always been an extrovert and a very sociable person. I’ve always enjoyed spending time with people. Thinking back to my childhood, even then I used to surround myself with a good bunch of friends, and this carried on into my adult life. Weeks were filled with social activities. To put it simply, I’d thrive best when busy and I’d choose a social activity instead of a quiet day at home anytime.

Then encephalitis happened, which left me with an acquired brain injury. Once the hospital figured out what had happened to me, I was rapidly released back into the big, wild world with not much information about what to expect or what recovery would look like. However, it didn’t take too long for me to realize things weren’t quite the same. One of the first things I noticed is how quickly anxiety seemed to take over my mind and body. I’ve never been an anxious person, so at first this was a very weird sensation for me to experience. The uncontrollable thoughts/worries, the sudden onset of nausea, the heart rate ramping up, the excessive sweating followed by intense fatigue is how anxiety has been manifesting itself for me following my brain infection. I was quite good at rationalizing it and understanding its triggers, but it also felt pretty surreal because they weren’t symptoms I was used to.

Anxiety affects me in a range of situations. For example, school pickups are still challenging for me most of the time — there is just too much happening at once. Too many kids running around, too many kids talking up a storm and screaming, too many people merging into one place at the same time and then there is me trying (desperately, may I add), to compose myself in front of other parents and teachers. All of a sudden that’s it — it’s too much for my new acquired brain and anxiety takes over.

My brain pretty much yells at me, Stop, get out of here and fast…it’s too much for me to handle.

These feelings/sensations are so different from the old me, that at times it makes me wonder if I’m a completely different person. As if the little green guys from a galaxy far, far away stole the old me and replaced it with a copy/paste version of my body but with a brand-new personality. I wish I was kidding, but being part of various online support groups, I get to read lots of stories of people who have suffered from encephalitis (we call it “e”), and it seems like I’m not the only one walking around with a shiny new me.

Anxiety is now pretty much a daily thing I have to deal with. Some days I can brush it off relatively easy, and other days I just gotta retreat into my bubble. I’ve found that I get particularly anxious around people that never got to know the old me, around people who don’t know me very well and in situations where I think (rightly or wrongly) I have to perform. Most people might argue that it’s not any different for them, that they all feel extra pressure/stress/anxiety or whatever you want to call it in some specific situations. I completely agree and realize that, and in a way it’s good and comforting to know everyone can relate to this.

I guess for me, the underlying reasons for the anxiety comes from a combination of all the residual effects the brain infection has left me with. Among a few, my speech can be quite slowed down and broken at times, my state of alertness/sharpness is somewhat hindered and I get very self-conscious about all those little things that didn’t used to be a part of me. I worry about how I’m going to come across, I worry about whether I’ll be able to express myself clearly, I worry about being able to keep on pace with what’s happening around me, I worry about whether I’ll make sense and the list of worries on bad days can be just about never ending.

Every now and again, I think the main thing feeding this newfound anxiety of mine is that I try too hard to be the old me…and I really do think that I’m on to something here. The personality shift sometimes appears to be such a big leap that I try extra hard to act like the old me, but the brain doesn’t approve. It doesn’t like me trying to make it work in ways it can’t operate anymore. The brain is pretty clever in lots of weird and wonderful ways, and I think that instead of fighting the new me, I should just go with the flow more and be more accepting of the new facets that “e” has added to my personality. All very nice and easy to write about it aye…putting it into practice is another thing. In time, I hope that I find a happy middle between the old and new me, best of both worlds!

So, please forgive me for my newly acquired social awkwardness. The girl who used to not fear social interactions is still in there under a bunch of self-protecting mechanisms that allow me to cope on a daily basis. I still like to laugh and chat, but it has to happen differently. I still want to be part of the life of the awesome bunch of people that surround me. Please bear with me, dear family and friends: interactions just needs to be scaled down for a while longer, but hopefully not forever and ever.

If you have suffered from encephalitis and have developed anxiety, check out this fact sheet that the Encephalitis Society has put together…no point in reinventing the wheel, right?

Follow this journey on The Weird & Wonderful of a Broken Brain

This story originally appeared on The Weird & Wonderful of a Broken Brain.

Originally published: October 25, 2019
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