Epilepsy — Scope | Disability forum
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Epilepsy

woodbine
woodbine Member, Community Co-Production Group Posts: 7,715 Disability Gamechanger
There has been a thread about epilepsy and PIP that has for understandable reasons been closed, although it's a shame as epilepsy isn't something that crops up very often on here. My own epilepsy started in 1998 (23 years ago this week in fact) after my second stroke, it cost me my job and many friends. My epilepsy has never been controlled by medication and I have been lucky with benefits getting DLA then more money when moved to PIP, and had no problems moving from I.B to ESA, but not everyone is so lucky. 
I also have a brilliant wife who has been a great support as have my family, but despite that it's an condition that in most cases leads to depression, and as I admitted on another post today I did at one point try and take my own life.
What gets me and I mean really gets me is that in the year 2021 there is till too much stigma attatched to epilepsy, and people just don't understand or want to understand.
In conclusion one of my pet hates is being called an epileptic, i'm not my condition doesn't define me I am a person with epilepsy.
Thanks for reading
Be extra nice to new members.

Comments

  • janer1967
    janer1967 Member Posts: 16,329 Disability Gamechanger
    Great post unfortunately it is the same with lots 9f conditions 

    Unless it affects a person or someone close to them they are often ignorant to it and especially the knock on effects of living with a condition for so long 

    Like myself and diabetes which has taken my leg , nearly all my sight , feeling in hands and leg and so on 

    However if they are ignorant of it they shouldn't make assumptions or comment about it 
  • Tori_Scope
    Tori_Scope Posts: 9,540 Scope online community team
    edited March 2021
    For transparency: I've removed three comments from this thread (some for context, rather than breaking the rules in their own right). I hope that this discussion can remain on-topic.

    I've moved your post into the disabled people category @woodbine :) It would definitely be good if there were more open conversations around epilepsy, as this would help to reduce the stigma. Hopefully others will see this post and share their own experiences. 
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  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,715 Disability Gamechanger
    @Tori_Scope thanks and I agree that I hope my thread might open up a dialogue about epilepsy as it can be a very lonely path to tread, although I never see myself as more or less disabled than anyone else on here.
    Be extra nice to new members.
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 Disability Gamechanger
    To some epilepsy is scarey becsuse they don't know what to do plus their are different types do people get confused 

    The first time I met someone who had epilepsy was a few years ago we had spoken a few times snd became friends she never mentioned she had epilepsy I was driving when it happend I coped well considering  I stopped the car made sure she was safe so she didn't hurt herself it didn't last long I had heard of it but never seen any one havring an episode  it doesn't make people any different they are still the person you know and friends with 

    I admit at first I was wary but that was ignorance the not knowing but my friend explained and it was all ok and we were friends for years I still miss her to this day 
  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,715 Disability Gamechanger
    Mike thats a good question in the early days I did find an epilepsy support group but they were so bad they wouldn't even tell me when or where their meetings were, then I joined a national forum which I found really helpful and made some good friends but it all fell apart for reasons that escape me.
    Lisa my worst event if thats what you want to call it was a "status" attack which lasted 6 hours in casualty, 2 days later my lungs packed in and I spent a week in ICU, when we moved to where we live now 10 years ago I got friendly with a guy and we went out a couple of times for a drink then he made it quite clear he wasn't keen on being out with me in case I had a seizure.
    We've lost count on the number of friends who have dropped us because of my epilepsy, even my own brother couldn't deal with it and although we didn't fall out he didn't speak to me for 14 years, families eh?
    Be extra nice to new members.
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 Disability Gamechanger
    @woodbine sorry that happens to you real friends don't do that unfortunately my friend jenny had an episode while she was on her own she had a a type thats called  grand mal  not sure how it's spelt 

    I dint know why people have to be like that sll they got to do is make sure your safe csnt hurt yourself on anything and phone an ambulance 

    Anything can happen to anyone at any time so does thst mean no one should have friends 
  • Paul7210
    Paul7210 Member Posts: 40 Courageous
    Hi @woodbine, it can can be a real difficult road with many conditions but epilepsy varies so much from person to person and is so unpredictable. My wife has severe epilepsy and she was diagnosed in 1979 when she was 7, over the years we've tried everything from Medications to Deep Brain Stimulation without much success . As you she transferred to ESA and PIP without much of a problem as you,  we was lucky to have our Adult Social Care Team to  help us though. Lisa's seizures are regular and also cluster meaning she'll always need full time care however we do make the most of clear days when we can. Lisa has also lost many friends over the years i think most people in this thread can relate to this, some of you might use the various facebook groups but even there people moan about the smallest problems and really don't understand how bad epilepsy can be or the side-effects including low/depressed feelings we even have daft admins that think they know everything and are somehow medical experts which is very annoying. I'm very happy to help anyone who needs a bit of support, take care @woodbine
  • MarkM88
    MarkM88 Member Posts: 3,130 Connected
    woodbine said:
    In conclusion one of my pet hates is being called an epileptic, i'm not my condition doesn't define me I am a person with epilepsy.
    Thanks for reading
    I can understand that fully. 

    I don’t like been called a diabetic, I am an individual with Type 1 Diabetes. 

    There is too much misunderstanding around it. 

    I had a colleague, he suffered with his epilepsy badly, he was having seizures on a regular basis at work and I didn’t know what to do or how to help him. 

    I made sure I did research, spoke with him and even encouraged our employer to send us all on a specific course that showed us how to help anyone having a seizure until an ambulance arrived. 
  • gizmovinney3169
    gizmovinney3169 Member Posts: 39 Connected
    Hi, I am new to the site my name is jade, I have lived with  seizure from when I was 2 years old I found people to be very difficult to deal with when they have no idea how it affects your life daily, its ingredients, I lost a lot of my  friends, over it too, but my best friend as seizure too, we look after each other, 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Please don't get me wrong @woodbine - of course there should not be a perceived 'stigma' about epilepsy, nor should another define someone due to their disorder; we are just people living with xyz disorders which don't define us; we just happen to have them. My disorder doesn't define me either.
    I found an email list about Ehlers-Danlos Syndrome (EDS), which was based in Canada, tho had many members in the USA & a few of us in GB....& it was the best group at the time. I haven't found 'my community' (other than here) tho find so much more understanding of EDS & Chiari 1 Malformation in the USA, & their Chiari experts who acknowledged that in some with EDS, Chiari 1 Malformation co-occurs, so they consider it 'Complex Chiari.'
    Have I given up the fight; well it took me 10 long years to raise awareness that these 2 disorders were linked in some here in the UK.
    It's not always easy to erase wrongful percepttions, but always worth a try (difficult when even some of our Drs. don't take things onboard).
    Good for you @MarkN88 - it's only by increasing awareness of different disorders that there will be more understanding.
  • Lisatho11987777
    Lisatho11987777 Member Posts: 5,787 Disability Gamechanger
    My disability defines me in my life what job I can do  what I can do when I get up in the morning 

    I belive that anyone's disability defines who they are 
  • chiarieds
    chiarieds Member, Community Co-Production Group Posts: 12,477 Disability Gamechanger
    Appreciate the above personal view, Mike.
    Personally, I joined this forum with the question was PIP considered as income as far as my imminent divorce was considered? I literally stumbled upon Scope from 'googling' my query. So, no, I didn't join because I was disabled, tho it could be inferred as I was in receipt of PIP that I might be.
    I have never viewed myself as disabled; still don't. I've often said perhaps it was easier for me growing up with a genetic disorder, & getting just very gradually worse. I didn't know what my disorder(s) were until I was 47, & then only through my own research.
    What frustrated me was being on the email list about Ehlers-Danlos Syndrome I mentioned, then realising some of the others &/their children likely had Chiari 1 Malformation, which they/the parents all initially denied (yet was proved to be correct in every case). So, perhaps these are the sort of people Mike mentions....either incredibly positive about what they know (or sticking their heads in the sand in denial).
    I've only ever met one person once who had my EDS & Chiari 1 Malformation combination. I have no problem in saying I, & my family have been affected by both disorders; the problem I've had is with countless UK Drs disagreeing there is an association over the past 10 years. So, personally, I've found rather the relentless negativity exhausting.
  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,715 Disability Gamechanger
    I understand what you are saying Mike, but I have come across so many people (mostly on facebook and epilepsy forums) that do allow the condition to define who they are and I just refuse to do that.

    I also agree that on a forum like scope disability shouldn't be some kind of competition as to who is most disabled, in fact it was a long time before I even realised that my epilepsy was so bad that I was disabled and it took over 15 years before I was told that the next seizure or the one after etc could kill me.

    I go back 48 years and a school friend of mine we were teenagers at the time, he suffered from mainly absence seizures, we had been to the youth club one night and I was the last person to see him before his parents found him dead in bed, he had a massive full blown seizure in his sleep and never woke up, very sad  :'(
    Be extra nice to new members.

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