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Epilepsy

woodbinewoodbine Community Co-Production Group Posts: 4,428 Disability Gamechanger
edited March 18 in Disabled people
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
"Putting a child into care, isn't caring for a child" (T.Rhattigan)

Replies

  • janer1967janer1967 Member Posts: 11,120 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 
  • mikehughescqmikehughescq Member Posts: 6,563 Disability Gamechanger
    edited March 18
    Prior to meeting my wife I went out with a person with epilepsy for nearly three years. Initially she hid it from me and subsequently from others. Her mother had major issues with it being disclosed at all. The impacts as ever were largely beneath the surface. Episodes were predictable but major. Latterly I have reflected much on that approach as I did similar with my vision albeit for very different reasons. I would never hide it now.

    I don’t think it’s that people don’t want to understand @woodbine. More that people want simple answers and explanations and even the apparently simplest of medical conditions come with complexities and nuances that are not obvious nor persistent easy to explain. What you say for epilepsy likely applies in some way to all of us here.
  • Tori_ScopeTori_Scope Posts: 4,989

    Scope community team

    edited March 18
    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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  • woodbinewoodbine Community Co-Production Group Posts: 4,428 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.
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • mikehughescqmikehughescq Member Posts: 6,563 Disability Gamechanger
    I know this won’t help much @woodbine but health conditions are a very lonely path for all of us to some extent. I was in my 30s before I met anyone with one of my eye conditions. I knew more than him and looking back I knew very little. I was in my mid 40s before I found my community and mid 50s before a found a second one. The difference is huge. Lots of conditions lend themselves to the idea that there can’t possibly be anyone else going through exactly what you went through and are going through and yet, if you can find others like you the common ground you find can be extraordinary and life-affirming. I’m not much of a big group person but I’ve found myself some life long friends as a result of those big groups and although they’re very different people to me the common ground is remarkable. 

    So, to what extent have you looked for your community?
  • lisathomas50lisathomas50 Posts: 4,324 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 
  • woodbinewoodbine Community Co-Production Group Posts: 4,428 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?
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • lisathomas50lisathomas50 Posts: 4,324 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 
  • Paul7210Paul7210 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
  • MarkN88MarkN88 Member Posts: 1,252 Pioneering
    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. 
  • gizmovinney3169gizmovinney3169 Member Posts: 23 Listener
    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, 
  • chiariedschiarieds Community Co-Production Group Posts: 9,114 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.
  • mikehughescqmikehughescq Member Posts: 6,563 Disability Gamechanger
    Not having a pot shot at anyone. Personal view but I find the whole “my disorder doesn’t define me” schtick a bit fake. Does it occupy my every waking second? No. Does it influence my every waking second? Yes. Does it define who I am? Absolutely. 

    Without my conditions I would wear different clothes. I wouldn’t need to cover up as much. My handwriting would look very different. My interests would be very different. I could, for example, do some things which involve fine detail. Many people have mistaken my head position pre eye surgery for my personality. I’m the guy who’s looking askance. I’m the guy not making eye contact. I’m the guy arguing with you as I misinterpreted and so on. I would eat different, messier foods. I would play more sports. 

    In what way do my disabilities not then define me? It’s become a thing to say and to be honest I think people do so so glibly with little thought as to whether they’re being genuinely honest with themselves. Would you be here without your condition on this forum even? No? Then you’ve already been defined by it. 

    Ultimately people understand you and your condition better if you own it and embrace it and have enough honesty to say that actually it absolutely does define you. One of the reasons many people struggle to join communities of people with the same condition is exactly that mindset of pretending all is well; there are so many positives and nothing to complain about. It’s known as inspiration porn. You join a charity which allegedly represents your condition and then find you’re not represented at all unless you’re prepared to be relentlessly upbeat and positive. 

    I do wonder @woodbine if you found what you thought was your community and then didn’t find the common ground you hoped for. I’ve spoken to others who’ve said this and the common feature is people finding the relentless positivity exhausting.
  • lisathomas50lisathomas50 Posts: 4,324 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 
  • chiariedschiarieds Community Co-Production Group Posts: 9,114 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.
  • woodbinewoodbine Community Co-Production Group Posts: 4,428 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  :'(
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • mikehughescqmikehughescq Member Posts: 6,563 Disability Gamechanger
    Similar here @chiarieds. Never thought of myself as disabled but a second additional diagnosis by accident at 46 of something which had been there all along changed all that. Like getting a missing piece of the jigsaw when you didn’t know there was a piece missing (or indeed a jigsaw).

    I’m not sure it’s about “allowing” yourself to be defined as disabled so much as admitting that, whether you like it or not, you really are. I found that that many of the dissatisfactions people have with the medical approach to them; other peoples attitudes or lack of knowledge etc. ultimately start from the fact that people really see such admissions as some kind of sign of weakness or failure rather than a strength which will bring you many of the breakthroughs you seek.

    We’re all are different points with this and some of us may not see it as a journey or a destination at all but it’s really interesting when you talk to counsellors of people with newly diagnosed medical conditions and they repeatedly say that those who move forward with the most positivity are those who fully acknowledged the extent to which they’d been defined or redefined by it. 
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