Relationships. The one word which conjures up a multitude of emotions in us all: dread, happiness, sadness, joy, comfort and difficulty. We can’t live them and we can’t live without them. It’s a process of slow self-torture acting out the same scenario repeatedly, risking it all, exposing ourselves to hurt and pain in that search for love and the humanistic need to be accepted.
How then is it different for a person with epilepsy? Well, we all have the same wants and needs as anyone else. It is amazing to me how many people all over the world still think we aren’t ‘normal’ and that epilepsy can be caught through touch let alone actually to have a relationship with someone – oh the shame! However that said, there are some differences which need to be taken into account, I like to think of it as information which needs to be acknowledged by each party before entering the relationship. The bottom line is yes, it’s dreamy to meet a tall, strong and gorgeously handsome chap that you want to spend every waking (and probably sleeping) moment with, but will they provide you with the security you need? – Sorry gents, that was from a female point of view, it works both ways although perhaps a little less of the handsome and strong for you?!
So the big looming question is, ‘when do I let the cat out of the bag and let this potential beau know about this condition?’ Should it be said on the first date, third, sixth, four months in perhaps – how long is a piece of string? I’m sure I speak for many epileptics when I say the fear of rejection is astronomical. Whether it affects you on the surface or not it will burrow deep into the psyche, rejection building brick by brick, unknowingly sending self-esteem and confidence plummeting on a subconscious level. I found developing what became an automatic monologue, very helpful. I would detach myself from any emotion I’d explain the condition, what happens with my seizures and then I would give an ultimatum, ‘if you can deal with this, great, but if you can’t I am unable to be with you. I need to know your decision because this is your opportunity to opt out’. This may seem a little extreme but when it comes down to it it’s self-preservation, I have to put my health and safety first. If you are with someone who is not comfortable dealing with seizures it puts that individual at risk.
Absences aside, I have never had a tonic clonic (grand mal) seizure with any of my partners except one. In hindsight, as with many seizure situations I can’t help but look back laugh or smile. On this occasion I was living with my ex-partner and his parents. Having done a one off overnight shift I was sleep deprived. I awoke the next morning, came downstairs and sat down to chat with his mum and dad. As I sat down I felt that infamous pins and needles sensation (the warning or aura prior to my seizure), promptly nose-dived off the sofa and everything went black. When I came round I was lying on my back looking up at his parents, realizing what had happened complete and utter mortification (which I don’t think quite covered it!) set in. The first thought was, ‘Oh my goodness (I think stronger language probably sailed through my mind) I’m in Peter’s parent’s house on the living room floor I’ve not only had a seizure but I lost complete control of my bladder and to top it off I’m wearing khaki’s!’ Now that’s the reality of epilepsy, worrying about the issues which really matter! Lucky for me his mum is a nurse and they were both brilliant. Peter rushed home from work to check on my wellbeing. I can’t even begin to express how loved and supported I felt, I have an eternal gratitude towards them for all they did for me. This example of support is what I wish for every person with epilepsy, sadly though it’s not always the case.
I haven’t had a seizure with my boyfriend of two and a half years. The epilepsy wasn’t an issue and he’s shown nothing but love and support. I know that if anything happened he would still love me, take care of me and keep me safe. He’s wonderfully practical and logical so it fills me with confidence that I would be fine because realistically it is always something that has been a concern at times.
Seeing someone you love have a seizure is both emotional and difficult. Until you have experienced this one can never quite know what the emotional reaction will be. That for epileptics is something which we just have to understand and hope that it will be positive. As I and many others often say, it is almost easier to have the seizures than to actually watch someone you love experiencing them.