Before you tell other people about your epilepsy, it will be of great value that you have come to terms with your diagnosis and become comfortable with your epilepsy. This will influence how you tell other people.
I think sometimes that it comes back to the acceptance. Because this is only a blip, and that comes across that you don't have any problem with it and therefore then other people don't either.
When you are officially diagnosed by a doctor, you may experience a lot of different emotions. At the beginning you may feel relieved in knowing what is happening to you. But you may also feel anger, shock, sadness, and confusion. You may feel alone, that you don't fit in anymore or frustrated because of changes you need to make to your life.
I mean there was the relief when I was told and that was the automatic instant reaction. But I had to face the fact that there was now elements of isolation in my life that weren't there before. So there was feelings of anger, but they became feelings of depression, feelings of anxiety, feeling of isolation and feelings of insecurity. They came along in the processing of having said, 'Oh well I'm glad I've got this diagnosis and I'm glad that I know what it is'. And then as my life pattern changed in the months afterwards, the other feelings did creep in.
It can take a while getting used to your epilepsy. Especially the changes you need to make to living your life. Here are some actions to help you become comfortable with your epilepsy:
- Learn more about your type of epilepsy by reading leaflets, booklets, and epilepsy websites such as Epilepsy Ireland. Talk to your health professionals such as your Epilepsy Specialist Nurse, consultant, GP or psychologist.
- Join a support group such as Epilepsy Ireland or an online forum where you can pick up more information by talking to people who also have epilepsy. By doing this you might meet other people who have your type of epilepsy and pick up tips on managing it.
- Tell someone close such as a friend or family member and share with them what is happening with your epilepsy.
- Practice how you would tell an employer or people in other formal situations. This will help you to make sure that you give them all the facts when the time comes to tell.
What always worked for me was just understanding. I would always advise people to get a book, do a bit of research, talk to somebody who has it and who has dealt with it well over the years and, just get a bit of support to talk about it so that you can very quickly learn to accept it.
I joined Epilepsy Ireland and they explained to me that okay, it's a support group, that you come in and you don't have to say anything. Just knowing there are other people like you, that gave me the confidence and the courage to actually say, okay, let's do something about this...and the comfort of actually knowing that there is the support there, can be more comforting than attending the group meetings.
Maybe talk to close friends, get used to saying the word out loud, get used to being comfortable with it. I think it's a big part of being comfortable with yourself and you know it's not going to go away. And then once you get used to talking to close friends about it and dealing with their reaction ... well then maybe you can get ready to tell other people.
Being comfortable with your epilepsy may take time. It is important to remember that epilepsy doesn't define you; it's only a part of you, you're not a part of it. You can