Epilepsy impacts on every part of your life, I think potentially that’s one of the hardest things to accept when you are diagnosed - it affects everything. It affects your ability to drive, the jobs you can do, how you learn at school/university, your social life and the most private aspect of your life…relationships. Before I start this, let me just say that I have always been very lucky with those around me; my ex boyfriend and husband have all been so supportive. I have never felt left out or alienated in any way, but that’s not to say that it doesn’t take its toll on the relationships I have had.
Being only seven at the time of diagnosis and then seizure free from 14 to 21 years old I was older before I had to address the issue of epilepsy and relationships. My then boyfriend was aware when my seizures started again, I never hid the fact I had epilepsy. Despite being seven years seizure-free, I never considered myself ‘cured’ and although I never broadcast the fact, it was never a secret. I was lucky he dealt with it really well. I can remember a seizure where I dropped an entire pan of boiling water over my hand; I called sobbing my eyes out. He was on his way out for a lad’s night and without question or hesitation he dropped it all and came to me. It could have been so different. We were 21 and in our final year at University but he was brilliant and I couldn’t fault him, until we split after graduating.
Nine months later I met my husband Chris. My epilepsy wasn’t totally controlled but it wasn’t a huge issue. My memories of how I told him were hazy but he tells me I was upfront and told him via MSN messenger (showing our age!). Before our first date, he said I was very matter of fact and never made a big issue of it. I guess that was always my approach, a need-to-know basis and then just accept it as a part of my life. I remember thinking I had to tell him and give him the chance to walk if he felt there-and-then he couldn’t deal with it. I have to live with this; he doesn’t. I will always remember my first seizure in front of him. It was before a christening, he took a step to one side and my family dealt with me. I remember being totally mortified and convinced after witnessing that he would leave but it didn’t seem to bother him and he still stuck around.
I think it is important to be honest with the people around you for a number of reasons:
A lot of the time we are a ‘normal’ couple, but there are times when epilepsy has turned that all on its head and put pressure on our relationship. There have been points in our relationship where Chris has all but become my carer and even more so when we were expecting our little boy. That’s the other thing isn’t it, when you dream of growing up and having a family, epilepsy doesn’t cross your mind, but it is something that you have to deal with and talk about. We had to talk about the risks during pregnancy and the risks when the baby arrived, it wasn’t all hearts and flowers but this is real life and the best way to be prepared is to be educated, talk as a couple and seek out any help you can. When my epilepsy is uncontrolled I am reliant on Chris and I find it really difficult. I am independent and hate to ‘need’ anyone. It causes a shift of balance in the relationship. You stop being equals and there’s a line to balance when things get better because you run the risk that the person without epilepsy can become over protective and the person with epilepsy starts to feel suffocated.
Seizure activity itself can cause issues, when my activity levels are high I can’t bear to be touched. It feels like my skin is crawling and I even hated having to wear clothes. I know there are times Chris said he felt I am being distant and has felt the way they are doesn’t stop the feeling of rejection when the person you love brushes you off when all you want is a cuddle It takes a very tolerant person to live with that.
This is all before you look at any potential medication side effects; one particular AED turned me into a different person. I was angry, emotional and not very nice if I’m honest and if I didn’t even like myself how was my poor husband expected to like me, never mind love me? It pushed us to our limits but again Chris’s patience stood the test of time and we got through it. I think the key to dealing with epilepsy within a relationship is communication, talk about things so you are both on the same page. I think sometimes as the one with epilepsy we forget that our loved ones are not mind readers and don’t know how we are feeling, so we have to be honest about how it’s making us feel.
As much as epilepsy can be problematic for relationships and it sure has meant we have seen each other at our worse, I also think it has meant that we have seen each other at our best. We are more honest and open with each other than maybe we would have been, we know we are strong as a team and we can get through anything if we face it together. Most importantly we never take anything for granted, we enjoy every second and embrace the good times when they are here. As our marriage vows said “ For better, For worse….In sickness and in health.”