My parents have been with me through this 17 year journey every step of the way. Over the years they have struggled to change their role from care giver back to parents. They have not ever fully understood me post encephalitis, this has lead to misunderstandings, conflicts and negative thoughts. I would love to have a better relationship with my parents but recently they have said and done things without thinking of the consequences. I have felt so guilty for the way encephalitis has affected our/their lives that I have never put my thoughts/feelings over, for fear of upsetting them. Has anyone else had a similar experience?
Changing relationship with parents - Encephalitis Inte...
Changing relationship with parents
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RED1224
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7 Replies
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Yes I have done.
Sometimes people say and do things without really thinking of the outcome/consequences. Sometimes I’m so angry or frustrated with how my husband reacts with situations now, that I have to try soooo hard not to exacerbate the situation. Perhaps this community will be a place to let your thoughts and feelings run free. Has your personality changed at all post encephalitis?.., if so, could they be struggling with the change?.. Although, you have been dealing with this for a long time..wow..17 years...this makes me wonder where we will be with 17 years behind us..it’s quite a struggle at the moment. Yet I know it could be a lot worse for us..
I had struggles but my friends and family tell me that I am essentially the kind, patient person I was as a teenager. There are many positives and things to be grateful for, I am just struggling with a few raw emotions. The situation will resolve itself, bridges will be rebuilt I remain positive as well as forgiving not blame.
As you said I can ask questions and let my emotions play out in a safe place.
How are you?
Hello RED1224, I will tell you my story. I had encephalitis as a young baby so I now know tvia Encephalitis Society recently that I must have had post encephalitis all my life and nobody ever knew what it was. I honestly don't know what life without encephaliis is. To me it was normality and that everyone in general is different. I have a long story to tell but will take several times to fill you in. But I had the best parents anyone could ever ask for in supporting me with my epilepsy and even after I became seizure free they still worried about me. However there has been emotional conflicts and misunderstandings etc . I tried putting my feelings across but my mum (who passed away over a year ago now) said that it made her feel guilty and often got upset. Tbere were one or two things that I always kept to myself though so L do understand.
Ilovecornwall4ever in reply to
I can totally understand why your mum felt guilty. Our daughter was diagnosed with MS, aged 21, and we often wonder whether our crappy genes have played a part.
It’s so tricky, isn’t it. I always try to be honest to my husband about the difficulties we are facing due to the encephalitis,(his memory is so bad, he can’t remember how he has been/or what he has done), but sometimes I know it will upset him- it’s important to let him know why we’re getting frustrated. He doesn’t mean to behave the way he does,and I understand that he wouldn’t have behaved this way before the encephalitis, but there are times when it would try the patience of a saint!! Luckily I can have a moan with our daughter, she gets frustrated too. So at least I’m not putting so much pressure on dear hubby. He gets really upset at times, because he feels he has no control over some of his actions. Hopefully this community will be able to give support to him too. He needs the support of fellow sufferers who really understand what it feels like - He’s on the inside looking out and I’m on the outside looking in!
RED1224 in reply to
That does make sense i am trying to be as understanding and empathetic with my parents. It is hard because we were both affected by Encephalitis when there was not much known or understood about the illness. So we and our families have had to get on with life as best we could.
Thank you for telling me your story it must have been confusing on one hand subconsciously knowing something was different. But as you said it is all you knew so therefore it was you "norm".
It is only since I have got married, becoming more independent and self aware, that issues have become more apparent with my parents.
Yes I do understand that your issues with your parents have arisen since you got married 'that does make sense'. When I first left home my mum was out of her mind with worry, so she rang me up lost count how many times a day and had long chats with her and my dad to put her mind at rest that I was ok and always said that if I wasnt well I wouldnt hesitate to ring them anyway and I did so if ever this happened. I used to see them every day because we missed each other really terribly, then many years later as a part of my CBT for my OCD it went to every other day but my poor mum could never get used to the idea of it because she was always very very anxious and had panic attacks. But my dad was more laid back even though he was worried and didn't mind whatever I dod if it was helping me. I've been living alone now for well over a decade now but I depend on my dad a lot to perform most of the compulsions to keep me clean otherwise thats a vicious cycle of lookimg ar things then avoidance tjen extra compulsions . My mym used to di most while my dad did the others but now my poor dad is taking on double work and is elderly. I dont know what I would do without him and am still in bereavement.
