What is it like to return to work after encephalitis?

Nicky, a volunteer with the Encephalitis Society, talks about her experiences for Encephalitis Information Week and shares some advice for what helped her.

Nicky

I had Herpes Simplex encephalitis back in 1993 which has left me with some hidden disabilities including Prosopagnosia and short and long-term memory issues. These disabilities have impacted heavily on what work I can do and I’ve had nearly 22 years’ experience of managing and maintaining a job after encephalitis and wanted to share some hints, tips and hands on experience to help others

After suffering Encephalitis thinking about getting back to work or starting a job can be a scary prospect for the following reasons:

1. You worry whether you will have the energy to manage a full day’s work now
2. You’re not sure which parts of the job might now be difficult for you
3. You’re anxious about what to tell your colleagues about your illness and any resulting disabilities you have and how they might react or treat you differently
4. You’re scared about not being able to do what you once could and letting people down
5. You may have had to completely re-think your career choice and don’t really know what area of work you can do

For all those reasons some strategies for managing getting back to work could include:

Preparing yourself for work

• If you’ve an interest in a particular job try out some part time/voluntary work in that area to suss out where the difficulties lie when there’s less pressure and then build some coping strategies in from there and gather some good references that can back up your abilities.

• Draw up an information sheet about your difficulties and what reasonable adjustments you need to share with any future employers. From experience every job is different and brings up different challenges so I always include on my sheet that I may need an extended probationary period to enable me to build in new coping strategies. I was also never quite sure if I should share this at interview or not but from experience of doing both it turned out better when they knew about my disability right from day 1.

• Be clear and honest with yourself about what you now can and can’t do and although it can be hard to quell some previous ambitions, start out small and move up step by step.

• If needed get support from the Disability Adviser at the job centre and use Access to Work (a government funded support scheme) to help identify strategies and or equipment that can support you in your area of work. This could be training for colleagues or an adapted piece of technology to help you record/recall or plan things.

Strategies for managing yourself in work

• Be open and honest with employers and colleagues from the beginning as if they don’t know you have difficulties, they can’t be expected to support you. I know this is a very scary prospect but under the equal opportunities act and Disability Discrimination Act all employers have a duty of care once they are made aware of your disability so involve the Occupational health department and from experience once they were aware of my difficulties and the legality of them most employers soon changed their ways. There will always be the odd one that doesn’t comply and in situations like those I suggest you get support from the Encephalitis society and/or some legal advice depending on the extent of the discrimination you are facing.

• Use a diary and notebook or the diary and notes functions on your phone to help you plan and remember what’s coming up/what you need to do and have done on a daily basis.

• Use small index cards that can fit in your pocket to write yourself daily reminders of any codes, procedures, instructions or notes of who is who to help you remember things and you can just refer to them in your own time

• Don’t be afraid to ask for help or additional time for tasks as if you carry on and struggle you may end up making a serious mistake that could cost you your job or your employers reputation and they would much rather you ask for help in the first place than mess up. Again, this is easier said than done but if you have been honest with your colleagues and boss from the start, they shouldn’t criticise your need for help and should make reasonable adjustments under the Disability Discrimination Act.

• Be honest with yourself if it’s not working for you, yes change is difficult but moving from a bad job to a good one can be enlightening and builds your confidence back so be reflective and confident moving forward.

• Celebrate your successes and keep a record of positive feedback you get to remind you on the hard days, of which there will be many, that you can do this job and you will get through it.

Aliya

Returning to education was a huge obstacle for me as I was jumping into a brand new major before my encephalitis kicked in and I only had one year of college left when the next semester started.

I technically could have done another year of college, but there was no way my family could have afforded another year let alone the four already traditional years. To make matters worse, I lost my memory from all of college, so all the material I learned was gone. I had to spend so much of my time teaching myself three years worth of information.

That’s almost $90k worth of material, and it just all went 'poof' in one night.

Right as I was ready to return to school again, COVID-19 restrictions kicked in and I was not able to physically return to my university.

I completely forgot what it was like to be a student, an identity I held for basically all my life. I suppose one could say assimilating back to school life was a little easier for me due to the fact that I was learning in my own house. However, while I was in those virtual classrooms, I was the one who had that fear of when I’d have my next seizure. What would happen if I miss more school and sent to the hospital? What would happen if I was sent to the hospital and now have to worry about COVID-19 as well? Am I even at the same level mentally as all the other students? Will I actually be able to graduate on time?

Personally, the best way to relieve these fears and have a somewhat normal education was to be open to my professors about my situation. I met with them and told them about what happened and what could happen. Coincidentally, I was a psychology student with neuroscience courses, so having these conversations about my encephalitis enlightened me even more and made me more comfortable to talk about it not only to professors but my fellow students.

With that, I’d advise people returning back to school after having been through encephalitis is to talk to someone. I’m aware how difficult it can be, telling a stranger about one of the hardest parts of your life, but teachers are meant to help you, and I know for sure someone at your school is willing to guide you.