The National Brain Appeal

Autoimmune encepalitis

My brother has been in hospital for over 4 months now and we as a family find it very difficult to see him in this state. I am the main person who rings th hospital every day. My mum is the worst person to explain things to, she gets very upset each time he is agitated and each occasion where she has visited him and he has slept all the time. I am then expected to phone the hospital and I keep saying to her that my calling is not going to change things. Does not help that I also live 180 miles away. It's very hard for me too having to deal with family emotions as well as my own and carry on with my life. On 2 occasions this week when I have been out she has called me crying which in turn upsets me. This disease is horrible and I am now at a stage where I can only cope for so long. How do families deal with all this .

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Honestly, there is no right way, nor a right answer, in how to cope. I have neuro-behcet's and I am sure that it is not easy for my husband and parents to watch me suffer when things are bad. I know that they hide their distress from me whenever they can, but I am not oblivious to it. That said, for their sake and for mine, I get on with my life as best as possible. I have two kids whom I adore and I love life in general, so I take every opportunity to do as much as I can, ensuring that I rest in between it all as well. I have neuro-behcets, but I have come to terms with it psychologically. The best thing for those around me is to see that I can cope. I can manage. I have found the tools to do that and those around me respect my ways of dealing with it. What I would suggest is that you help your sibling to find some kind of happiness, something to do while he is in hospital, in bed, and so on. Not being bored is the key. If he finds a way to occupy himself and his mind, that will make him happier, which in turn will make those around him (including your mother) happier. In the end, much distress about illness is borne out of the unhappiness that it brings to the sufferer and the caregivers. Sh!t happens in life and there is not a thing you can do about it. However, you can find a way to accept it and see all the other wonderful things around you.

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