It took me many to start the process of understanding Encephalitis and my journey. But reading encephalitis society members stories made such a huge difference for me. It also gave me the confidence to start writting my story.
Has reading others stories helped red... - Encephalitis Inte...
Has reading others stories helped reduce isolation or increase understanding?
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RED1224
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23 Replies
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I think both really, but I also learnt quite a lot from the Encephalitis website, booklets etc and their support services as well. However I'm starting to find a couple of acquaintances with similar problems which I have never had before. If you wish we could ask the Encephalitis Society if it's ok for us to stay in touch I'm made up for this opportunity. 😁 I have also enjoyed signposting people to the right professionals, yes it's great. But cant stay on here 24/7' which is how often my emails come. 😑Nobody can do that.
RED1224 in reply to
I have made friends and aquantances through going to events. Asking for contact details then staying in touch. This has lead to meals out, walks, get together, coffee afternoons. So it is possible it just depends on where you live compared to other members. But for some events people make an effort and travel from far and wide.
in reply to RED1224
Well first of all I'm housebound and even just to go to doctors is a really traumatic process the run up to it and when I come in because of my very severe OCD which takes up all that day and the next day and several days beforehand so I avoid it if I can. But I can certainly phone text or email though. Where do you live?
RED1224 in reply to
That is useful to know I will ask some questions at the Encephalitis Society see what they can do. My wife and I live in Oxfordshire.
in reply to RED1224
I live on The Wirral in Merseside. I'm miles away aren't I?
Are you a participant in the Encephalitis Society's Connection Scheme, Paula37? This is a service where you can sign up to be connected with people who've had similar experiences of encephalitis to you - and it's a correspondence service so you don't have to leave the house to get involved. Here is more information and the signup page, just in case you're interested: encephalitis.info/connectio...
in reply to EncephInternational
Hi, I have been on the Connection Scheme for about two months now and I introduced myself to three people on there and vice versa. But after that first email from each one I have jeard nothing and I didnt want to disturb them incase they were having real problems that might need immediate
attention so I'm still waiting.
Great to hear you've given it a go, Paula37! If you wanted to reach out again to your initial connections, they may be waiting to hear more from you to get back in touch? You can also always get in touch with the Encephalitis Society to request more connections any time you like.
in reply to EncephInternational
Thanks. I will do. Do I send yourselves an email to request?
RED1224 in reply to
I have also found this, first few e-mails have been ok. Then it all just goes quiet and I do not know what to do? Do they want to be contacted? Do they just want to left alone?
So I know what you mean.
in reply to RED1224
Well I don't know whether or not they do. But I don't mind at all patticipating. If you wish, I could be a new cotact for you. I feel as though we have both made a new friend here. 😁
Hi Paula37 - please don't worry that you need to be on here 24/7! The HealthUnlocked emails are automated, which is why they're sent round the clock. They're just there to let you know what posts have been made that you might be interested in engaging with. Please don't ever feel you need to be on here more than you'd like to be.
in reply to EncephInternational
Oh I see. I didn't know that. Well I'm enjoying signposting people to the right professionals. Ideally I would be on here preferably between 15.00hrs and22.00hrs which is all I can fit in but then all my emails mount up and end
up with a backlog of them which takes up a lot of my 'me
time'.
You don't need to be on here for any set hours, Paula37, or worry about doing anything with the emails you get from HealthUnlocked. Come on here to share your experiences with others as and when you like! There is absolutely no pressure or expectation of your time 
in reply to EncephInternational
Thanks so much.😊
Paula37 thank you for sharing and making this experiances better for me 😀
in reply to RED1224
You are welcome. 😂
I know I'm fairly new to the Encephalitis Society but I am finding it's starting to do the same for me... it's still early days yet though.
Although I'm only new to the Encephalitis Society fairly recently I would say it certainly has increased my motivation a lot, and so far I have made two new friends and some new aquaintances as this process does take time. I also find it's slowly starting to make a difference to my life. The Society have also put a name to what was going on for me throughout my childhood days when nobody could ever make me out it used to baffle them. If only I had have known all this back in the 1980's I think it could have made a huge difference but it wasn't there then.
It is a double edged sword. What if I did this earlier? Would this knowledge have made a difference in the way my life played out?
I know exactly what you mean and it must have been very confusing for you as a child as well as growing up with this mystery illness.
I wonder why I have not done more to understand Encephalitis or reach out to the society. After 17 years it is only now I see all the benefits.
I am glad you are seeing benefits with your life, socialising making friends and aquantances.
Thanks so much. 🤗
