Lack of family support?

[Riosmum]

Hi, just wanted some insight into how other's families have coped with the illness and where I can find some help to encourage better support.

I was diagnosed with AE in 2018 and since then now suffer with long and short term memory loss, epilepsy (once a week tonic-clonic seizures) and others affects such as fatigue, emotional struggles, etc. I live with my girlfriend 300 miles away from my family and she is absolutely brilliant and supportive but we recieve very little support from my family. My parents have visited a couple of times since but my brothers and the rest of my family seem to not understand that the illness, post hospital and coma stage, is still very serious and life restricting. I have now fallen out with my brothers because I finally brought up how their lack of support upsets me (one won't even let me go round to his if I visit them because he is scared to see a seizure).

I just feel lonely that I can't seem to get my family to understand this is a long term illness and the after affects of AE are just as bad as the illness itself and that my girlfriend has to do so much whilst they do nothing.

Has anyone else had these struggles and found a way to get through to their family? Sorry for the negativity!

[alpappy]

I have found family less supportive than close friends who knew we well before I was ill I just take support where I find itAlan

[Paula-38]

Hi Riosmum, I had HSV encephalitis and status epilepticus together way back in the 1970's as a 1 year old, so I used to have tonic clonic seizures approximately monthly in the earliest days, then it went to every other month etc until I was 10 , so my parents always witnessed me having them, but my Mum was always "living in fear" incase I had another one and when I did have them, they were consecutively sometimes nonstop, and my Mum used to have panic attacks and sometimes shout out with fear, I only wished she kept quiet like my Dad did because she frightened the living daylight out of me while I was in and out of consciousness and all I wanted was a bit of quiet that's all.I have certainly had enotional struggles yes, but no memory problems or fatigue ever.

I have had no physical ailments now since 1993/4. Still I hope this helps you.

[GedBus]

It can be very hard realising that some family don't want to know. I too find it hard to accept that although I learned to adapt . Now if they need me I no longer respond as I'm simply doing to them the way they done to me. Lonlieness is difficult yet these hardships make me stronger than ever and more resilient. I now take charge of my life and responsibilities without wasting energy on those too ignorant to truly care about anything other than themselves.

[Paula-38]

I do know that my illness had a bad effect on my Mum more so than my Dad, but also my Nan. I didn't have fatigue or memory loss but I did have Status Epilepticus so it was only when I picked something up like tonsilitis, a cold, the flu etc that would trigger my grand mals off and was often hospitalized. The most I ever had was monthly and little kids are more likely to pick things up anyway but I feel so sorry for you having them every week aww. 😒

I think this seems like a long gap compared to other people, so I took the opportunity to think right well nothing is going to beat me and I didn't care what I had to do to achieve it either. No way would I let that get to me because as far as I was concerned I had a life to live just like everyone else and that I was no different apart from I took medication that was the only difference that's all. It's only this last year or two that I discovered that it is a long term illness so I didn't know and nor did my family! In fact we got told NOTHING! Because nobody knew in the 1970's, 1980's there was no Encephalitis Society or Children's Brain Injury Trust 'CBIT( ' I only heard of them this year). But I must admit that it did cause family arguments at times like if I was getting my Mum to let me be independent like my Dad did, talking throughout a tv programme, even when recorded because they didn't want to see it again, and it should have finished by now but I kept rewinding it to pick it up then the whole process started all over again so they said I hadn't missed it even though I had plus they THOUGHT I had a huge lack of understanding which I never had, in actual fact it was my 'slow processing speed ' and executive function. I used to suffer from severe paranoia, anxiety, depression and now I know that from the age of 12 or 13 I was showing early signs of Obsessive Compulsive Disorder OCD which I have actually suffered from since I left school really but had to wait till I was 18 to get into the system and to get a diagnosis, because nobody knew in those days what OCD was and not many people had heard of it then, oh and as a teenager I used to suffer terrible from anger and into my early 20's but the CBT and OT Iwas getting for my OCD was a marvellous help to me. Have you tried CBT at all for your emotional struggles?

I have never had fatigue or memory loss but I can well imagine how difficult it must be for you and your family. Hope this helps you a little bit.

[Ocean96]

Hi Riosmum,

I'm so so sorry to hear you've been so unwell and have been having such a hard time.

If its any comfort, I too have family members who don't understand my illness or the after-effects that come with encephalitis. Especially my two brothers who lived in different countries at the time of my diagnosis. I think they found it hard to accept as when I saw them again I looked healthy but thats the thing with brain injuries - they are generally invisible to the people around us.

I'm so sorry you've fallen out with your brothers. I'm sure yous will reconcile in time. It sounds like they lack information and communication.

If you do get another chance to talk to them about it here is a link explaining the after-effects of encephalitis - encephalitis.info/encephali...

But all you can focus on right now is looking after yourself. I was diagnosed with autoimmune encephalitis in 2017 and I found seeing a therapist really helpful. The therapist also helped me understand my family's reaction too which was hard to accept at times.. I felt so misunderstood. The Encephalitis Society have a great youtube channel where others share the stories.. it helped me to see I'm not alone. Here is the link - youtu.be/xmakC_VhP-Y(Not working as expected?)

Also, the society holds virtual gatherings which I join myself and find really helpful. Here is the link - encephalitis.info/blog/virt...

Thank you for sharing your story and remember you are not on your own. We understand and support you

[ASH1956]

Hi Riosmum I can empathize with you as on the outside you look better but inside a complete mess, Depressed, Anxious, Tired, Isolated, don't like crowds, do not know what to talk to people about, can't mix, have panic attacks, feel embarrassed in company, fearful when shopping, can't sleep, can't concentrate. All these things are invisible to people and you were never told this when discharged from Hospital, I liken it to trying to find your way around the London Tube, with certain stations closed, can't read the signs, don't know where you are going or why, frightened to ask people for directions because your are nervous. Many Family members assume because you were discharged from Hospital you must be okay,but you have had a Brain Injury, what has changed is dependent to where you had the infection, maybe understanding, hearing, feeling cold / hot, can't word things properly or use the wrong words, get angry, sad, tearful etc. It sounds like your partner cares for you a bit like my wife who has supported me but they also see changes and have to adapt. The problem with family is that do not see this on a day to day basis and find it hard to understand. Please do not alienate yourself from your Brothers it is their confusion and uncomfortable feelings that make them perhaps find it hard to accept the new you. It does get better overtime as you adapt and start to live again, it is a little like bereavement on their part for the new you. Perhaps the Society book that explains this may help them to read. Good Luck