Support can mean finding understanding, ways to cope, or to feel more in control about living with epilepsy. Here are various ways that you can find support if you need it.
Other people around you
For some people the support that feels most important is from others around them - family, friends, colleagues or community groups. Epilepsy varies so much from person to person that other people don't always need to know a lot about epilepsy to offer your support. They may just need to know how your epilepsy affects you, and what kind of support from them you would find helpful. For example, you may want to give them some information about first aid or tell them how you feel after a seizure and what helps you to recover.
Other people’s reactions to epilepsy can be very positive, but some people don’t know what to say, or may feel helpless or worried. Information and support is available for everyone, including those who care for someone with epilepsy.
Your healthcare team
The doctors that you see for your epilepsy will focus on your medical care, but they can also help support you through good communication. Feeling supported by your healthcare team may include being able to ask them questions and tell them honestly how you feel, and knowing who to contact if you have a query about your treatment in between appointments. Your GP may also be able to support you by liaising with specialist doctors or services on your behalf.
You may feel that talking face-to-face to someone about epilepsy is daunting. Sometimes it is easier to talk to somebody anonymous, over the phone. We have a confidential helpline that offers time to talk, information and emotional support.This gives you the space to explore your thoughts or feelings for as long as you need to, and in as much depth as you feel comfortable with.
While people around you may be very supportive, you may feel you would like to talk to other people with epilepsy, or to those who care for someone with epilepsy. There are support groups run by volunteers around the country. These groups are often popular with people who want face-to-face contact with people who are in similar situations.
For contact details of groups call our helpline.
Information and resources
Finding out about epilepsy may help you understand more about how it affects you personally and help you feel more confident. Your doctors may be able to give you specific information about your epilepsy, and you may also find our information about epilepsy helpful.We supply free ‘I have epilepsy’ cards and first aid cards that you can put in your bag or pocket. This can help other people to know that you have seizures, and how to help if a seizure happens.
We also have information on alarms and safety aids, safety in general, and about other aspects of living with epilepsy. Our booklet ‘The Bigger Picture’ has information about epilepsy and mood and looks at ways to deal with the anxiety and low mood that may come alongside epilepsy for some people.
Being diagnosed with epilepsy may affect you in different ways. Some people feel relieved to be given a name and treatment for their condition. Sometimes a diagnosis can be confusing or hard to come to terms with. Talking about any worries, asking questions and sharing information may help you, and your family and friends, to make sense of what is happening.
Practical and financial support
If you have epilepsy you can get free prescriptions, and discounted or free public transport. Depending on your situation you may also be entitled to benefits or support from social services or other agencies.
Some people find it helpful to talk to a counsellor or psychologist. Counsellors give you the opportunity to talk through things at your own pace. Although some counsellors may make suggestions, they do not normally tell you what you should or shouldn't do. They will listen and help you to see how you can develop ways to cope emotionally and practically. Counsellors won't necessarily have expertise in epilepsy, but they can work with you to focus on what you want to do to manage your specific situation.
There are various counselling styles, including Person Centred Counselling and Cognitive Behavioural Therapy (CBT). Person Centred Counselling uses a flexible approach and sessions are focused on allowing the person themselves to decide what is right for them and how they would like their lives to change. CBT follows a structured style that focuses on achieving goals over a set number of weekly sessions. CBT is popular with people who like to have goals to aim for.
Most GPs can refer people for counselling, and the counselling offered is usually six weekly sessions. There may be a waiting list for counselling. Some people find their own counsellor, and there will be a charge for this.
For information and to find a qualified counsellor visit the British Association for Counselling and Psychotherapy (BACP) (opens in a new window).
If you like the idea of structured sessions and working in a group setting, then you may be interested in the Expert Patients Programme (EPP) and other self management support run by self management UK (opens new window). The EPP is a free course for anyone living with a long-term health condition (and is not epilepsy-specific). The course runs once a week, for six weeks. The course aims to provide support and develop self-confidence to help you feel more in control of your condition.
The course includes:
- dealing with pain and extreme tiredness;
- coping with feelings of depression;
- relaxation techniques and exercise;
- healthy eating;
- communicating with family, friends and professionals; and
- planning for the future.
EPP sessions are run by trained tutors who have long-term conditions. There are ‘Staying positive' workshops (opens new window) for 12 - 18 year olds, run by young people. There is also a course for carers (opens new window), and some courses are also run online.
There may also be other courses run in your local area. Contact your doctor’s surgery, local library or council to see if there are any in your area.