How I Coped With Anxiety and Depression After Encephalitis

As the founder and administrator of two rare disease discussion forums, I run into a lot of opinions on a daily basis. The topic on these forums is encephalitis, which is an acquired brain injury. Forums such as these are a priceless resource for people new to the issue. It gives them the ability to discuss, ask questions, and learn more from others who have coped with a similar situation.

Post brain injury, many survivors experience serious emotional issues such as depression and anxiety. These issues are a very common topic in our forums, as people ask about whether or not to go on medication to deal with these issues. As you can imagine, responses are varied.

I am an encephalitis survivor; I am not a medical professional. I recall dealing with anxiety in the early days post-encephalitis. I recall when my husband asked me why I was crying I would reply, “I don’t know why I’m crying!” I remember trying to mentally escape. I would curl up in bed, wear headphones and rock back and forth as I listened to Pachelbel’s “Canon in D Major” over, and over again.

My medical professional said I needed to start on medication to control my anxiety. I replied I was not going to start taking “tranks” (tranquilizers) every day. It was explained to me that post-encephalitis, I was left with a chemical imbalance in my brain. Taking this medication would not cause me to giggle uncontrollably nor to laugh out loud at inappropriate moments. This medication would just balance my system and allow me to feel normal.

It can take time to find the best medication. Each person’s body chemistry is different. An anxiety medication which works for your friend or family member may not be the one which works for you. Personally, the first medication prescribed for me did not work. It actually made me feel worse, not better.  The second medication prescribed worked very well. I started out on quite a high dosage and found it swiftly brought my emotions into balance. Over the years that followed, my doctor slowly reduced my prescribed dosage. Currently, I am taking the minimal dosage of this medication. One doctor chuckled as he said to me, “Wendy, you could probably have the same success by taking one piece from a box of Smarties every morning. But if this works, then we achieve our goal.”

An activity that also helped me is meditation. This does not replace the need for medication; it is an option which really helps many people relax and grow inner strength as you relax and focus on yourself, blocking out issues. Like my listening to music in my early days post-encephalitis, I taught myself how to meditate daily. How to lay in a quiet room, and slowly count my breathing, thinking and focusing on the numbers as I counted each inhale. My mind would wander, and I would start counting again. I also used the alphabet to help settle my mind. I would think of “A” as I inhaled, then think of a word starting with “A” as I exhaled. Next inhale, I’d think of of “B,” etc.  This meditation worked very well when I was going through a difficult time and was struggling to get to sleep at night. With the alphabet method, I never once made it to “Z.”

Deciding whether to go on medication is not a case of personal strength or determination. It is a case of discussing with your physician and doing what works for you. Please remember, being on medication is not a decision which tells us about your personality nor your determination.

• A person on medication is not a lesser or weaker person than one not medicated.
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• A person on medication is not a person who could/should have tried a bit harder to do without those meds.
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• A person on medication does not lack strength or courage.

Finding the correct medication for you can be a struggle. It really doesn’t help when others tell you that you should toughen up and try to go without. Balancing your system and achieving your own “normal” is not an easy challenge to accept, but it is one worth taking.