Epilepsy isn’t easy for anyone but for men, and boys contemplating adulthood, it can pose particular physical, social and emotional challenges. While those challenges don’t come with easy solutions, there is help available and you are never alone.
Jenny Ritchie, an experienced counsellor and coach, has been supporting people with epilepsy for almost 20 years. She says that while men tend to be less proactive about accessing support, the impact of connecting with people who really understand what you’re going through can be profound.
“While I’m not keen on generalisations, I think we recognise that men – broadly speaking – aren’t keen to show what they view as ‘weakness’ or admit having fears or anxieties. That cultural thing about being the breadwinner and the driver and the protector can become a real burden when you’re faced with an epilepsy diagnosis.
“Unfortunately, if you’re bottling up all those self-esteem issues, negative self-image, depression and anxiety, that tends to have a knock-on effect for seizure presentation. By not talking, you could actually be making things worse.”
According to the Epilepsy Queensland team, the issues men tend to struggle with most following an epilepsy diagnosis include the impact on their employment and earning capacity, the potential loss of their driving licence, and changes to their social life – including alcohol intake and participation in sports.
But there’s often even more going on under the surface, Jenny says.
“There’s a lot left unsaid; a lot of secret thoughts and worries. Things like being a new parent, am I able to hold the baby? Am I going to be trusted or safe to look after children by myself? Then there’s the worry of whether your condition will be passed on to them. These are all issues that can play on your mind, but you might struggle to talk about.”
Given the links between focal brain injuries sustained through the likes of sports and motor vehicle collisions and late onset epilepsy, Jenny says that men can suddenly find their lives turned upside down.
“Life is normal for you, and then suddenly it’s interrupted. At an enormous level. It’s very much a loss of identity and, particularly in the workplace, you might not want to tell anyone. Perhaps you don’t want people to know about that vulnerability – not your employers and not even your colleagues.
“I find that men do tend to think ‘it’s all over’, principally because of those cultural norms; how can I be a ‘man’ if I can’t drive or be the breadwinner? It’s a huge hurdle to overcome, but there is support.
“That masculine perception that ‘I need to be tough and strong’ and ‘I don’t talk about things that bother me’ really stands in the way of accessing help and moving forward. But once someone points them towards us and we’re able to engage and keep that connection going, we can make a real difference.”
People with epilepsy are more likely to develop depression and other mood disorders and, while there can be many reasons for that, Jenny says that stigma and social conditioning are certainly significant factors for men.
“The thing I’ve noticed over the years is that peer support is huge for men. It can be difficult to get them to talk to a counsellor or psychologist, because if epilepsy has come on later in life, they tend to just want the problem to disappear or be given a way to ‘fix’ it, but engaging with other men who are in the same boat as them can be a transformative experience. Just knowing that they aren’t alone and that they can share without fear of judgment.”
While epilepsy is a complex condition, Jenny says, there’s a lot of people out there feeling the same things you are.
“In many cases, men don’t come to us willingly; I don’t think they even realise that there are resources out there. But we are at the end of the phone and email for people throughout their epilepsy journey.
“I know a lot of men don’t find it easy – for men who developed epilepsy in childhood there can be even more of a disconnect when it comes to developing relationships and connections and maintaining them, but we’re here to help. When someone reaches out to us, but needs that extra push to move forward or for us to take the lead in maintaining the relationship, we persevere, and we check in.”
But it’s not just the social and emotional implications that take their toll. An estimated 40 percent of men with epilepsy will experience low levels of testosterone, which can be caused by both epilepsy itself and some of the drugs used to control seizures. Reduced testosterone can adversely affect things like energy, mood, drive and sexual function.
“So, you have all those worries, the seizures, the medication, perhaps a bit of anxiety and depression and on top of that you might have low libido or erectile dysfunction,” Jenny says. “It’s a really complex mixture that can have a big impact on a person’s sense of self and wellbeing.”
If you’re experiencing problems with sexual function, it is important to discuss them with your specialist.
“Don’t be afraid to talk about it,” Jenny urges.
“Your doctor may be able to prescribe alternative medication for your epilepsy, or something to counteract its effects on testosterone or sexual function.
“As with all things, it’s better to reach out and get help with finding a solution rather than suffering in silence.”
To find out more about how Epilepsy Queensland can support you, or connect you with others who understand your journey, contact the Living Well team on 1300 852 853 or livingwell@epilepsyqueensland.com.au.
