Men’s Health Week: Men and epilepsy

 

This week is Men’s Health Week. Our Helpline & Information Officer, Stuart Macgee looks at some of the issues frequently mentioned to us by men who are living with epilepsy or been newly diagnosed.

Our helpline regularly receives calls from men struggling to cope with a diagnosis of epilepsy.  Common themes are epilepsy’s effect on confidence, mood, general mental health and wellbeing.

Of course, this is not unique to men, women are equally affected by this, but men can find it more difficult to reach out and talk to someone.

For Men’s Health Week, let’s have a look at some of the issues frequently mentioned to us by men.

 

Coming to terms with epilepsy

Being diagnosed with a long-term condition like epilepsy can be a stressful experience. It can cause such a complex mixture of emotions ranging from sadness to anger.

We don’t want to generalise, but men can find it more difficult to talk about how they feel.

Anger is a common emotion leading to frustration and resentment, which in turn can leave us with a sense of loss of control and unfairness.

Be patient. It can take time to get your head round being diagnosed with epilepsy. Some men tell us they see seizures as a sign of weakness. Far from it, epilepsy is a physical condition and is caused by a temporary disruption to the electrical activity in the brain. There is nothing anyone can do to stop a seizure once it takes hold.

Knowledge can be powerful and empowering. Find out as much as you can about epilepsy from your medical team or from our helpline team on 0808 800 2200.

Once you have a better understanding of the condition, you may feel more in control of your life and your future.

 

Family life

One of the first questions often relate to family life and relationships. Will it affect my relationship? Can I still be a good dad? What if I have a seizure in front of my children? These are all completely normal concerns shared with us by men.

Epilepsy will not stop you from being a good dad or spending quality time with your family. First step is to make sure the whole family have a chance to learn about epilepsy.

Children can be very resilient as long as they feel involved and have an opportunity to express how they feel and ask questions.

Our storybooks for young children can help explain epilepsy in an age appropriate way and can be a starting point to talk about epilepsy with your child.

You might have to think about some safety precautions depending on the frequency and type of your seizures to keep you and anyone else safe.

Our Staying safe with epilepsy guide has a lot more information on the subject of staying safe, plus there is a chapter on being a parent with epilepsy.

 

Social life

We know from talking to men that they can find it difficult after a diagnosis of epilepsy to cope with some of the social pressures they feel. There often is a strong desire to be ‘one of the boys’.

You might not feel like going out as much, at least in the beginning until your seizures are better controlled, and this can sometimes lead to a sense of isolation and loneliness.

Epilepsy does not mean the end of your social life. Take it easy, allow yourself to feel a bit more comfortable talking about your epilepsy. If you do not feel like going out, speak to a close friend and explain how you feel about having a seizure in front of others.

Knowing someone else is there to look out for you, someone who knows what to do in case you have a seizure, can make you feel more confident.

You may have been told by your consultant to avoid alcohol for the time being. This can be difficult for anyone for whom drinking with friends is an integral part of their social life. Always follow medical advice.

Generally, alcohol is ok in moderation but avoid binge drinking at all cost. This can put you at risk of having a serious seizure.

 

Driving

Driving is a lot more than getting from A to B. For many men it is part of their identity. Losing your licence after your first seizure can feel devastating, especially if driving is also an integral part of your job.

This is one area of your life, which will need to change for the time being. Safety is paramount, and you need to be seizure free for one full year, for an ordinary driving licence, before you are allowed to drive again.

Keep in mind that with the right medication between 50 and 60% of people with epilepsy can have their seizures completely controlled.

More information can be found in our driving and epilepsy factsheet.

 

Work and career

Epilepsy is a disability as defined by the Equality Act and gives you rights against unlawful discrimination.

This means that an employer needs to consider making reasonable adjustments to allow you to continue doing your job safely, even if your seizures are not yet controlled.

A reasonable adjustment could, for example, mean changing your starting times to suit public transport timetables if you can no longer use your car to get to work.

Your employer can also redeploy you to a safer position, if this is an option at your place of work.

An employer needs to do a thorough health and safety risk assessment, this often means a referral to occupational health. Only if they cannot make your job safe and cannot redeploy you to a different, ie safer, position, can they consider letting you go.

Men sometimes feel the pressure of being the main bread winner and wanting to support their family. Apart from the financial impact of losing a job, it can also have a big impact on self-esteem and identity.

Talk to someone, don’t bottle it up. If you don’t know where to start, phone our helpline on 0808 800 2200.

We can signpost you to another agency who can give you employment specific advice or advice on financial support including any benefits you may be entitled to.

Finding out about your rights and what steps to take to protect your job and income can give you back a sense of control.

There’s more information like this in our Men and epilepsy factsheet. Don’t be alone, reach out to someone. It might be difficult to open up, but you will be glad you’ve done it.

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