Two epilepsy sufferers from Stevenage are helping highlight the loneliness and isolation that can be felt by those with the condition.
Ruth Bussey and her eight-year-old daughter, Starla have shared their stories with the charity Epilepsy Action, which found in a recent survey that six out of ten sufferers experience feelings of loneliness.
It comes in the run up to Purple Day, the global awareness day for epilepsy which falls on Mother’s Day.
Ruth has suffered with the condition her whole life, but her daughter has just been diagnosed.
She says she can sympathise with the feelings of isolation that Epilepsy Action has identified.
She said: “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 or the anger you feel when people say the most idiotic and ignorant things to you because of it.
“People can’t feel the exhaustion or other side effects from the sheer mass of medication you have to take and will never know the feeling of shame when you hear people have laughed at you because of your condition.”
Ruth said the hardest part of her battle with the condition has been finding out her daughter also suffers from the condition.
She said: “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.
“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.”
Epilepsy Action chief executive Philip Lee, said: “The survey results are a clear indication that the challenges of living with epilepsy are wide-reaching.
“Epilepsy is an invisible condition yet it affects people’s lives in so many ways and can leave people feeling alone, isolated and misunderstood.
“We know that loneliness can have a significant impact on people’s physical and mental health, and even life expectancy. It doesn’t have to be this way. Epilepsy Action is there for people when they need us most, whether it’s a chat with one of our helpline experts or friendly support at one of our coffee and chat groups.
“On a weekend when many people will be getting together with their families, we are asking people to donate so Epilepsy Action can continue to make sure people with epilepsy don’t have to be alone.
“This will help to break the cycle of isolation which so many people with epilepsy have to face on a regular basis.”
Purple Day was created in 2008 by then nine-year-old Cassidy, a Canadian girl living with epilepsy.
The event sees purple themed fundraisers taking place across the UK.
For more information or to donate visit epilepsy.org.uk.
If you have epilepsy and you feel alone, you can call the Epilepsy Action Helpline on 0808 800 5050
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