I was diagnosed with epilepsy at seventeen, in my first year at university. As you can imagine it came as quite a shock to me, and to my family.

Today, I have a wonderful husband, a beautiful four year old son, good friends, a job I enjoy, a nice home, and a happy life. I still have epilepsy, though it has been completely controlled for about four years. So how did I get from being a shy, insecure seventeen year old, frightened and confused about this diagnosis of epilepsy, to where I am now? What has helped? What problems have I faced? How have I dealt with them?

I hope my experience and thoughts on the journey I have had, will be of help to other teenagers who may be battling with this diagnosis, as well as parents who are unsure of what strategies to use in supporting their child with epilepsy.

?         Become an expert on your own type of epilepsy- once you do this, you feel more empowered, more in control of things. You can do this initially by asking your neurologist or doctor exactly what sort of epilepsy you have and then getting more information on that form from your local Epilepsy organisation, the library, or the internet. “Epilepsy” includes a whole range of seizure types and syndromes. I have partial seizures, coming from the left temporal lobe- a fairly common sort of epilepsy. Although I don’t get any ‘warning’ prior to a seizure as some people do, I now at least understand what is most likely happening to me and what behaviour I may display while I am not fully conscious.  Sometimes my seizures are absence seizures, while other times they spread to become a complex partial seizure. Usually I just stare and go completely quiet ~ sometimes people who don’t know me well don’t even recognize that anything is wrong.  Other times, I may start asking questions about things I really do know (such as, “who are you” “where am I”) while I become fidgety, often playing with my earrings.  Rarely, if I am really ill, stressed or lacking in sleep, the seizure may spread to both sides of my brain and become a full convulsion.

?         Aim to get your seizures controlled. This is so very important because once they are controlled you can do just about everything anyone else can do ~ including getting a driving licence. Getting them controlled may mean getting the best possible medical care, communicating well with your medical team, taking your medication exactly as prescribed, and taking care of yourself. Most people (x%) are able to gain control of their seizures with the initial mediation prescribed.  For others a new medication or combination of medications may be required.  If by chance you are one of the small percentage of people who don’t gain control relatively early on, don’t lose hope!! There is no denying whatsoever that it is a long, hard road to travel until you succeed, but don’t lose faith.  For me it took 14 years . . . but I made it! There were plenty of tears, heaps of frustration, anger, sorrow, anxiety, depression . . . you name it, BUT none of these things passed without giving me increased strength, resilience, self belief and determination ~ even if it does take hindsight to realize this.

?         Be aware and sensible, but not overanxious about safety- for me, this has meant I don’t swim alone, and as yet have not driven a car alone. I do have my learners though and hope to be driving quite soon.  I have been sure to let my driving instructors know about my epilepsy up front and they in turn have been patient and attentive in not placing undue pressure on me. Do all you can to control your seizures and then put into place some strategies, just in case you occasionally do have one.  I have learnt that it is only fair to both myself and my colleagues to let someone I trust at work know I have a type of epilepsy.  By telling them how to help me if I have a seizure, I can feel secure that basic first aid is available should I need it and that I won’t bring about undue concern and fear to those around me as a result of their potential misunderstanding or confusion.  When I was first diagnosed I was reluctant to let anyone know about my epilepsy, but now I am happy to tell anyone, and can do so quite confidently.  I have done a lot of public speaking to large groups about my experiences with epilepsy, which has had the most amazing effect in boosting my self esteem and confidence. You may occasionally see me on TV talking about it also. Being able to openly tell others what I have, and continue, to deal with has made me accept epilepsy as part of my life unashamedly, and if anything feel extremely satisfied that by sharing my experiences I may be able to shed a faint ray of light, or a shimmer of hope, on others who may be going though similar times.

?         Be as independent as you can be. This is a normal thing that all teenagers want to do, but if you are a teenager with epilepsy, it can be harder. Having said that, I still think it is important to gradually build up to using public transport alone to get to and from school or work, or to go out with friends etc.  I was a very shy, insecure teenager who really lacked confidence ~ and having epilepsy didn’t help this. I went through university without ever telling a sole about my epilepsy, which I now realize was NOT the smartest thing to have done.  However, since then I have always managed to tell a select few friends that I have epilepsy, so if something happened when we were out they knew how to help.  When I was twenty-one I left home, and went to work and live for a year at Kingfisher Bay Resort & Village on Fraser Island.  I really loved it, and became more confident and able to take care of myself. Not long after this, I went to England with a girl friend, and lived and worked in London for a couple of years, often traveling to other European countries. That was wonderful for me, and it was there that I met my future husband. Throughout all of this however, I have always been careful to take sensible precautions.

 LASTLY- MY THOUGHTS FOR PARENTS

?         The parent’s attitude is really important. I sometimes wonder if parents feel guilty when their child has epilepsy, which in turn makes them feel ashamed, embarrassed or uncomfortable in some way. My parents didn’t really talk about my epilepsy in any depth at all, and still don’t even now. I really wish it was something we could have talked about in a casual yet more meaningful way over the dinner table, in the way maybe a child’s asthma or diabetes may be discussed.  Although you cannot ask nor expect someone who does not have epilepsy to understand how you are feeling and what you are experiencing, I have always wished that there be more empathy from both my parents and siblings.  That is not to say I wanted them to feel and act shocked, fearful, anxious, unhappy, distraught or sorry for me ~ just to seem more interested and eager to understand. I think I that would have been helpful.  It’s important for parents to be OK about the epilepsy, interested and supportive, even when their child has become an adult.  As it turned out for me, I was in my mid to late twenties and married when my epilepsy was at its worst.  Although I was no longer a teenager living at home, knowing that my parents truly understood what epilepsy was, how the medication was trying to combat the seizures and by their attempting to understand what the lesser known side-effects of epilepsy (anxiety, panic-attacks etc) are and how they present themselves, would surely have helped them to offer support to me of a deeper kind than you can give without this knowledge. This was something I craved, and still do at times.

?         Parents should also get really well informed- Knowledge is Power. Epilepsy can present in so many different ways, with different treatments and outcomes.  It is important to get the information ~ that way you arm yourself with the tools needed to deal with it.

 Epilepsy has had a profound effect on my life since my diagnosis 18 years ago.  It is so very easy to remember the tough and miserable times ~ the aching muscles after a seizure, the confusion, tears, dismay, anxiety etc ~ I, like many others, could write a long list of all the ‘negatives’.  I truly believe however, that ‘everything happens for a reason’ and that ‘you are never handed a problem in life that you don’t have the strength to handle’.  I can use my personal experience as a testament to these.  I have proved to myself that I was able to get through the darkest times that epilepsy presented to me and through this I have been introduced to the powerful inner strength that I didn’t know existed in me.  I have learnt endurance, persistence, resilience, patience, self-discipline, compassion and charity, and gained confidence, strength and a much greater appreciation for all things good in my life.  Based on this, how can I say with fairness that epilepsy is all bad . . . ? From what was a dark cloud, I have managed to find the silver lining, and believe that if I accept the challenge to continue looking, I can only find more.