Ruth is 32 was diagnosed with epilepsy at the age of five. She lives in Stevenage with her 8-year-old daughter Starla, who was recently diagnosed with epilepsy too.
“After suffering with epilepsy my whole life and through that having many difficult experiences, the hardest thing of all was finding out my daughter now suffers from the condition. The heartache and anger was something I had never felt towards the illness. Any mother would know that things hurt more when it’s your child and not yourself that is being or has been harmed.
My daughter has coped incredibly well and I think this is partly because she has seen me have to pull myself up and carry on through hard times so it has installed in her a strong mentality towards any affliction or difficult experience she may encounter. I admire her incredibly and her strength of character has only made me love her more. We have always joked that we are so similar, so I say to her, ‘Oh come on, darling you don’t have to copy me with the epilepsy as well.’ Of course, she can’t always hold it together and be positive, as I often can’t either. But we both find it easier to joke about it, as now we both forget things so often! My biggest hope, though, is that Starla grows out of it whereas I didn’t. We will always be there for each other.
Living with epilepsy is lonely, as so many people are ignorant about it. It doesn’t matter how many times you explain things; they will never understand. They will only see the seizures and not the other sides to this illness. They will never know the confusion post-seizure. They will never know the pain you feel in your head after a seizure or the pain from injuries. They will never know how difficult everything is with this condition. They will never know the anger (you feel) when people say the most idiotic and ignorant things to you because of it. They will never feel the exhaustion or other side effects from the sheer mass of medication you have to take. They will never know the feeling of shame when you hear people have laughed at you because of your condition. They will never know the pain you feel when you see your daughter will have to deal with all these things as well.”