What one piece of advice would you give to someone who has just been diagnosed?
In September 2018, we asked our Facebook community what was the one piece of advice they would want to give to someone who had just been diagnosed with epilepsy. Our Marketing and Communications Executive, Paige Dawkins, talks more about the responses we received.
How can a diagnosis feel?
Everyone will have their own unique reaction to being diagnosed with epilepsy. Some people will feel scared, some people will feel confused as to where the epilepsy came from, possibly seemingly out of the blue. Some people will feel relief, as they finally have an answer to the seizures they have been experiencing. Coming to terms with a diagnosis can depend on someone's own personal life experiences, as well as the support and information they have available to them at the time, from family, friends, and healthcare professionals.
One thing that we learnt from our Facebook post was for certain - a diagnosis of epilepsy does not necessarily mean the end of an enjoyable and fulfilling life. For some people, their experiences with epilepsy have actually taught them valuable lessons, and for others, epilepsy has not stopped them from achieving their dreams. Below is a selection from over 130 comments we received on the post; here is the advice that our followers would give to someone who has just been diagnosed with epilepsy.
Our follower's advice
'Actually I have 2, 1 to the person and the 2nd to the care givers:
1) The biggest problem with Epilepsy is not seizures its other people and their perceptions/attitude.
2) parents,guardians & carers go against you natural instincts and dont wrap someone up in cotton wool. Give them space to grow learn and make mistakes the usual way. Yes its tough on you as you will invariably have to pick up the pieces but it will be invaluable to the child/individual as they will learn not to be defined and constrained by their condition.'
'never let your epilepsy beat you I got diagnosed 8 years ago I have a one year old baby I work and live a normal everyday life I've ran half marathons done the tough mudder and more events I thought things were going to be awful and went to a size 16 I'm now a size 10.'
'I hate it !! But I’ve learnt to live with it. Don’t let it dictate your life x'
'Don’t panic. Work with it, not against it.'
'I have just recently been diagnosed with TLE and the hardest thing I’ve had to deal with is losing my driving licence which has been a complete life changer and very stressful at times. But I still believe you can still be happy as anyone else. You are just going to be living a bit differently from now on. And it’s ok to feel crap about it xxx'
'Take each day as it comes and treat today as the gift it is...the present.'
'That it’s not the end of the world. It just feels like it. But you will come to accept it and manage it the best that you can. That it’s more common than you think. And that it does not define who you are x'
'Don't fight the people around you who are trying to help, my big mistake.'
'I've had epilepsy all my life, from the age of 18 months and I'm 34 this week. The one thing I would say is. Epilepsy is part of who you are. It's a sucker, we learn differently and act differntly but we still human. Don't let people think epilepsy is a big tabo to talk about. Coz it's not.'
'Make sure you get an appointment with a neurologist. They have a much better chance of helping you control your epilepsy than a GP.'
'it means you have to do some thing differently sometimes but it will only stop you living your life if you let. You find your own coping mechanisms, I have a dark sense of humour that freaks people out sometimes if they aren't used to me.'
'Always look for the positive, get to know your body & brain. Stay away from booze.'
'Just roll with it as best you can! The more you stress or get frustrated it just makes it worse and doesn’t get you anywhere. It’s hard when others don’t understand but don’t push them away most of the time they are doing there best x'
'Do not let it take over your life. You will learn to adapt to certain restrictions life brings with epilepsy...but you can still have a fulfilled life in other ways. Just take care of yourself and be sensible with your decisions'
'Remember to take the meds...and on time. '
'People don't understand what its like to think is it going to happen today, that feeling of just wanting to stay at home just incase, but you have to get past this and get help from others in the same position as yourself, joining my local epilepsy coffee and chat group has made me realise that there are people worse off than me and that I've just got to get on with it, not being able to drive is crap, it effects the whole family not just myself, I have really low days but just put on a brave face and get on with it! Don't let it stop you living!'
'Keep positive...life gets better x'
'To know your not alone and to know it is good to talk. Xx'
'Trust yourself and your body. You know your body better than anyone else possibly could. Try not to blame yourself. And for me that’s still really hard. Don’t give up. It’s not easy and is most definitely a life changer. But just love yourself as much as you can with all the trials and all the not knowings. The brain is a largely uncharted map and in hard times lean on that, on the people who truly love you and peace wherever it may be. And through your journey, as hard as it may be eliminate those who are negative and unsupportive. Educate yourself and others in your life and last but not least; the brain is a muscle too and it needs to be worked out. Keep on keeping on'
'Don't bottle your feelings up, talk to people who have epilepsy, it really helps a lot. Join epilepsy groups xx'
'Take your meds regularly. Don't skip them but if the side effects are unbearable, you CAN request to try a new drug. What is great for one person is terrible for another. Get the right drug for you.'
'You are not alone x'
'Get your free bus pass!'
'It is still who you are. It teaches you to respect your body and pay attention to its signs. It makes you stronger while you have to talk about it to several people, sometimes ask for help... You can live a perfect life with epilepsy :)'
'Don’t let it define you as a person, it’s only a part of you not all of you'
'Be kind to yourself.'
'Take your meds at the same time each day, get enough sleep and keep stress as low as possible. Don't live in fear of having a seizure (easy to say but hard in reality) and try and live your life to the full.'
'Try take it all in and learn about the medication and your triggers what starts it off and after that live your life to the best you can do. Dont let it become a label and drag you down rise above it and be yourself xxxx'
'Talk , cry , love but most of all laughter has helped us stay positive'
'Take every day as it comes! But don't let epilepsy define you. The epilepsy society packs are amazing too so definately get yourself a few of those, and especially the just diagnosed pack - they help so much!!'
'Just don't give up on anything. You can live a full life with the right medication. And the most important thing: here you're not alone.'
'Patience. It's a bumpy ride so keep strong. '
'Research other people's triggers. What's okay for one person may not be for you. Sewing actually triggers me. (Focusing on Fast patterns)'
'Sleep is important! Too little sleep can make seizures worse. While sleep can really help post siezure recovery.'
'I know it's hard, but please don't give up. Don't let epilepsy rule your life! '
'You have just started a new chapter in your life. Epilepsy is not how you are, it is what you have. Be patient and learn what your body is telling you'
'Hey plenty of rest and keep a regular routine with eating / sleeping xo'
'Don’t panic. it’s not the end of the world and you can live a normal life'
'It isn't always life changing. The right meds might be the first you try x'
'There are always better days. Relax and accept the dark days and know they'll not last forever.'
'Do not let it change your dreams goals & plans in life.
It's a condition we have to live with not let it rule our life.
I have never let it get the better of me or my dreams goals & plans.
I am a husband a dad run my own businesses stood as an independent candidate in last years general election!
A personal goal from a young age.
Epilepsy is not the end of your life journey it's part of it!'
Our online social community
On our social media pages, we share information about epilepsy, news stories, blogs, personal stories and community posts such as the above. If you would like to join our online community, follow us on Facebook, Twitter, Instagram and LinkedIn.