Purple Day - How Epilepsy Affects Families

On 26th March, people and institutions worldwide will be wearing purple and hosting events aimed at raising awareness of epilepsy. This is important not just for those with epilepsy themselves, but also for their family and friends.

Epilepsy is a distressing condition, which can have a number of effects on families. We’ll cover some of the most common effects below:

FOR THE PERSON WITH EPILEPSY

Epilepsy is not a distinct condition. It’s an umbrella term for any condition which causes seizures. Seizures themselves can range from brief and barely-perceptible ‘absences’ to full-body convulsions.

However they manifest, seizures can be disorienting and distressing for those which experience them, and they may have a number of impacts upon quality of life. People with epilepsy may:

• Be unable to drive. Depending on the type and frequency of seizures, people with epilepsy may be legally prohibited from driving. This can restrict their independence, and make them reliant upon friends or family members to carry out logistical tasks which most of us take for granted.
• Feel unable to express what’s happening to them. Epilepsy is a very hard thing to understand from the outside. Many symptoms are invisible, and those which are visible can seem unbelievable to those who witness them. Many people with epilepsy struggle to explain what they’re feeling and experiencing to others. This can be frustrating.
• Be worried about being ‘burdensome’. Most people with epilepsy can function perfectly well in daily life. However, some forms of epilepsy require more support than others. Having to rely on others for things like transport isn’t much fun, and can lead to feelings of uselessness and/or insecurity.

FOR FRIENDS AND FAMILY OF PEOPLE WITH EPILEPSY

For friends and family of sufferers, epilepsy can be confusing and upsetting. It is never pleasant to witness a tonic-clonic seizure. Witnesses may feel helpless, worried, upset, and confused. It’s difficult to know what to do under such circumstances.

Family and friends of people with epilepsy may:

• Be frustrated that they can’t ‘fix’ the problem.
• Feel anxious about their loved one’s health and wellbeing.
• Feel helpless.
• Be unsure what to do in the event of a seizure.
• Minimise or misunderstand the impact of ‘smaller’, less visible seizures.
• Over-react to ‘larger’, more dramatic-looking seizures.

WHAT CAN YOU DO TO COPE WITH EPILEPSY IN THE FAMILY?

Epilepsy is a stressful and uncertain thing to live with. Here are our top tips for coping with epilepsy in the family.

• Seek treatment. Many forms of epilepsy can be controlled through medication and other forms of treatment. There’s no need to suffer when treatments are available.
• Talk to the sufferer (and believe what they say!) It’s hard enough to have epilepsy, but it’s harder still when you can’t get people to understand what you’re experiencing. If you’re unsure about the condition or how to handle it, your first port of call should be to talk to the sufferer themselves. They know best of all what’s going on with them and how you can help (or even if they need your help at all!). Believe what they tell you. Sometimes, it may look as though someone experiencing a seizure is fine when they’re not, and at other times a dramatic-looking seizure may simply need time to work itself through.
• Build a support network. The support of others is crucial if you’re finding yourself struggling with your loved one’s epilepsy. Other people in your situation can provide you with valuable experience and perspective.
• Learn what your loved one needs. There are lots of misconceptions about what people should do when someone is experiencing a seizure. Many people with epilepsy emerge from seizures to find that well-meaning onlookers have tried to prevent them from biting their tongues, or called ambulances unnecessarily. Sometimes, of course, these kinds of interventions are appropriate – but you won’t know that until you understand the nature of your loved one’s condition, and the kind of support that they need.
• Encourage your loved one to be open about and attentive to their ‘warning signs’. Some (although by no means all!) forms of epilepsy come with ‘auras’, which can give a short period of warning before the onset of a seizure. If your loved one can identify these ‘auras’, the onset of a seizure will be less unpredictable and frightening. Understanding the warning signs will also give you a chance to take measures like settling your loved one on a soft surface, or helping them to get in the recovery position. It’s also worth noting that some lifestyle or environmental factors may increase the likelihood of a seizure – stress, for example, or an unhealthy diet. So, pay attention to what’s going on in life in general if seizures are getting more frequent.
• Don’t let epilepsy rule your lives. It’s easy to let anxiety about epilepsy become all-consuming. But there’s no need for this. If you understand what is happening, when it’s happening, and why it’s happening, epilepsy can be coped with. Don’t let it hold you or your family back!

CAN COUNSELLING HELP FAMILIES TO COPE WITH EPILEPSY?

Accredited counsellors are well aware of how difficult it can be to live with a chronic condition – whether you yourself are the sufferer, or someone you love is suffering. If you’re feeling a bit overwhelmed by epilepsy, a counsellor can provide a safe, non-judgemental space for you to express your feelings and concerns.

A good counsellor will help you to work through your feelings, and will provide a valuable outside perspective on what you’re experiencing. This is important, because we are often too close to our troubles to see triggers, patterns, and so on. Learning more about how your emotions work and where they’re coming from can help you to combat them in practical ways.

To find out more about how counselling can help you, check out the rest of this website.