When I started thinking about this blog I knew I was going to be opening a can of worms. How do you talk about epilepsy? It can be a very emotive topic and I have seen many arguments break out over the years in forums and support groups because of terminology and phrases used. So I decided to do a bit of research for myself.
The University of Liverpool are currently carrying out research into the correct way to talk about epilepsy which has made me decide to put it out there to everyone I know to compare opinions. I drew up a quick list of phrases and words I have heard or used over the years and put them out there for debate. Needless to say the responses came thick and fast. Whilst I’m guessing I have nowhere near the responses the University of Liverpool study have had – I’d say I had about 80 -100 replies, I think I have had a fair response to make generalisation, and please bare in mind they are just that. I want to say thank you to everyone who took the time to reply it really has been appreciated. And please note this is only my throwing together replies – not a real study!
I asked what people opinions were on the following words and asked if any had their own to add that they used/liked/disliked
4) Funny (by this I mean 'I feel funny' or something similar)
10) Grand mal
12) Focal or Partial Seizure
16) Suffers from Epilepsy
I wasn’t going to add my opinions to this but as I’ve asked others I figured it wasn’t fair not to add mine, and after 23 years of living with epilepsy I think I’m entitled to an opinion. Again this is just my own personal opinion – it isn’t the right or wrong way, and I know it is an emotive subject but please be respectful of the opinions that will follow, both my own and others.
Let me start with the ones I don’t like.
Disease – I just don’t. To me it sounds like I should be avoided for fear of catching it!
Fitty: Not one I’ve ever used, don’t like it in this context and to be honest when someone says fitty – I think they are about to point out a good looking person!
‘Suffers from Epilepsy’: Ok I know on paper I do, I get that but I dislike this being used. I have epilepsy, I refuse to say I suffer from because I will be damned if it controls my life. Although at times I am aware it makes me suffer!
Epileptic – This one I am not a fan of for numerous reasons. Firstly I just think the word itself sounds horrible. 2) I am a lot of things: a Mum/wife/sister/aunt/daughter/friend before I am an epileptic. Epilepsy is part of my life it is not who I am. I know it is used quite widely, when the paramedics handed me over to resus I was a ’28 year old known epileptic’ and I am ok with it being used, it is just rare that I ever use it.
Most of the terms I do not like are because I feel they give the epilepsy more control/stature than it deserves. I like to think I am in control, that I manage my life, that’s it part of my life but not my whole life, it is part of me but not all of me. It’s a mental thing so I always feel like I am on top of it.
My first one and probably the one that causes the most debate. Fit v Seizure: I use fit over seizure (except in my blog strangely!) When I was diagnosed the term was epileptic fit so I use fit, always have and always will. I tend to find when you are talking to people (doctors included) they will always use seizure until I say fit and then a lot of the time people follow suit and start using fit. If I am feeling unwell with the epilepsy my term since I was a little girl is “I feel funny”. I always found it amusing that my neurologist knew what I meant when I said it, he said I wasn’t alone in describing activity as that! Despite being 30 I still find that the way I talk about my epilepsy is quite childish just because they are phrases that I started using at the age of 7. I use terms such as simple/complex partial seizures when talking to the medical professionals, personally I say my eyes have gone fuzzy or use absence or aura when talking at home. I haven’t used Grand Mal or Petit Mal in a long – they aren’t words I have heard used since I started medication again at 21. I say I have a condition not an illness. Don’t get me wrong epilepsy makes me ill sometimes but not all the time.
Those with Epilepsy and Parents
All of these are just general overviews of what have been said to me but I am trying my hardest to make sure I cover everything!
Fit V Seizure – again the big debate. I have to say with this seizure generally came out as the preferred term. Reasons for Fit not being liked included: old fashioned, stigma attached to the word or people don’t like it being used in the wrong context e.g. “she was throwing a hissy fit”. Another reason included that Fit was too generalised that having a laughing fit was not as serious as an epileptic fit. I had one counter argument for this and that was somebody who told me this story. Her relative has epilepsy and had a seizure. This resulted in him ending up in the neighbours’ garden. The neighbours called the police, when she spoke to the neighbours and said you know he has epilepsy and has seizures their response was “well he wasn’t on the ground shaking and unconscious”. She went on to explain that she has been cautious of using the word seizure ever since.
Fitty and funny: divided opinion, I would say the split was 50/50 on whether people used them. Everyone who the term Funny used it in the same context as I do and it was primarily amongst young children. Several parents said they would ask their children if they felt ‘funny’. Again there were some with epilepsy would say ‘I feel fitty’ and then others who disliked the term for much the same reason they did fit.
Epileptic was again this caused heated debates. Mums of children with epilepsy had this to say “They aren't epileptic. It doesn't define them. They are a child with epilepsy.” Whilst somebody who has epilepsy added this “I’m not an epileptic. I have myoclonic and Tonic Clonic seizures.” However all said they had heard it used on numerous occasions.
Disease/Illness/Condition: For this there was a clear loser. Not one person asked used disease or liked epilepsy being referred to as disease. “It's not an illness or disease. It's not something that goes away.” Illness was a 50/50 split one argument against it was
“X would say she's not ill so it's not an illness. Had many a chat with her about this because initially school were overly protective and said she was "too ill" for swimming etc. She says if you're ill you can't do stuff but she can.” Very wise words for a young one!
Pet names: When asked for what those with epilepsy or parents called seizures I got a whole list of names and phrases: “We will say her brain is misbehaving or she's having "nasties".” “Away with the fairies”, Moments, Dizzies, fitty, funny, wobble, having a turn (my Dads favourite!) all featured. However these were words that most people didn’t like if they didn’t know somebody with epilepsy well. I can only assume it is because they aren’t used to the context they would be used?
Grand mal/petit mal: I found that these terms were both considered out of date and many with diagnosis within the last ten years or so had never heard these/knew what they meant. I found that all the technical terms people openly said they only used these when talking to medical professionals.
One person told the story that when their employer was made aware they had epilepsy they banned the phrase ‘brain storming’ from being used in the office in-case of causing offence. This was done without even asking said person her thoughts on it!
Those without Epilepsy
Bless them I dared to put this one out to them! After lengthy conversations the general over view is this: Most don’t use epileptic because they are aware I am not keen on it, but they would use it when talking to others. Most use fit over seizure, however are conscious to use seizure when talking to others as I have said before that it appears to be the PC way to talk about epilepsy. That said I did have a few say they didn’t like the word fit. Condition was preferred over illness and no one said disease. Illness was mentioned but only in the context that I can be unwell with epilepsy ie the tiredness/injuries etc. My family and closest friends use funny but only when talking to me really and understood what was meant by the word in this context. They had also heard of all of the words on the list but didn’t tend to use any but didn’t have a huge problem with any of them. Friends said they used both absence and Tonic Clonic.
What was nice about this was I got a lot of feedback from people that don’t have epilepsy. I was told at one point I shouldn’t have an issue with being called epileptic because that’s what I am. However as I said an opinion is just that. Again disease was the word that was disliked by all but I did get this message and feel it raises a fair point “Most people are against the word disease because you cannot catch epilepsy, but the definition of disease has nothing to do with being catchable. People don't catch motor neurons disease but disease is still in the name. Definition of disease is 'a disorder of function that is not a direct result of physical injury'. By that definition medically speaking everything that causes a functional difference from what is considered normal function is a disease (and I believe that they have a disease database which pretty much has everything in it)…when you come to do your blog post I think you need to caveat that it is based on people's personal interpretation of a word rather than its true definition.”
Again I found the ‘petnames’ tended not to be liked just because they hadn’t heard them used. Illness split opinion with one person saying “you can have epilepsy and not be ill”. And one of my favourite answers in relation to the word episode “It is not a showing of EastEnders?”
Such a long post! Now what can we conclude from all of this? What is the correct way to talk about epilepsy?
ANSWER: Those who have epilepsy or care for somebody with epilepsy cannot agree so how are we supposed to find a ‘correct’ way to talk about it? It is so often personal preference and therefore no correct way to talk about epilepsy. The overwhelming consensus from everybody that I spoke to was this: They don’t care what you say or what words are used as long as epilepsy IS being talked about. If we are talking about epilepsy it means we are raising awareness and helping to minimalize stigma. We all have our phrases and words and if you try and second guess the ‘correct’ way nobody would ever talk about it. Generally speaking those of us with epilepsy/caring for someone with epilepsy are a hard bunch to offend so next time you wish to talk about epilepsy or ask questions– go for it! I promise that person will be more pleased that you are talking rather than concerned with the terminology used!
My final word on the subject goes to a little girl who sister has epilepsy. When asked if there were any other words she would like to add to my list to describe Epilepsy – she simply said “annoying”. I don’t think there is a single person who will disagree with that!
Again a huge thank you to everybody who took the time to get in touch and share your opinions, you made this possible.
Happy few weeks
A big thing happened in our house this week. I bathed Noah alone, with nobody else in the house! It has only taken me 8 months! This is a huge thing for me, it was drummed into me so much not to bath him alone that I became scared to. My Mum and Dad bought him a bath seat last week so I decided to bite the bullet. I worked on the basis that him being in the seat meant he wasn’t solely relying on me! Noah loves the water so much and now he has his seat and a few bath toys he really does enjoy bath time. I was shaking the whole time but it was a success. :-)
UK Blog Award FINALIST!!!
In my last blog I mentioned that I had been nominated for a UK Blog Award and as I sit here now I am beyond proud to say I have made the final in two categories!! The awards ceremony is on Friday 29th April and I am so looking forward to it!
Epilepsy Action Awards
This week I am off to Leeds for the Epilepsy Action National Volunteer Awards. Noah is staying with Nanny and Grandad, it’s the furthest and longest I will have been away from him so I am a bit nervous! Having said that I am looking forward to the awards and to hearing the other winners’ stories.
Epilepsy Society: Nominate your Epilepsy Hero
In this last week I found out that a lady I met via a Facebook support group has very kindly nominated me to be Epilepsy Society Epilepsy Hero. If I am picked as one of their winners I get to attend the Queens 90th birthday celebrations on 12th June (one day before our boys 1st birthday!). I am so touched that she thought of me and took the time to nominate me, thank you Elizabeth! You can nominate your Epilepsy Hero here: http://www.epilepsysociety.org.uk/patrons-lunch-2016-nominate-your-epilepsy-hero-0
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.