Information about non epileptic seizures and Non Epileptic Attack Disorder.

Coping with Emotions Around NEAD

By on 16 April 2015 in General

Getting the diagnosis of NEAD may raise a variety of mixed feelings and emotions. Here are some of them and ways in which you can deal with them.

Denial

It can be very hard to accept the diagnosis. The stigma attached to being diagnosed with a mental health issue is still very strong, despite efforts by campaigners and charities. It’s strange that if someone is diagnosed with a physical illness such as diabetes or heart disease or even the common cold everyone immediately rallies round and does whatever they can to help that person but no one seems to know what to do to help someone with a psychological illness. Unfortunately, even health professionals can be affected by this bias. For the people who have a deep trauma as the cause of their seizures, it can be a relief to finally be able to acknowledge that trauma. However, many people who develop NEAD don’t have an obvious traumatic event in their lives and may not even feel particularly stressed or anxious. These are the people who are most likely to refuse to accept the diagnosis, may seek second and third, or more, opinions and may demand more tests.

Accepting the diagnosis is the first major step towards getting your seizures under control. Non epileptic seizures are caused by overwhelming stress…your body is no longer able to cope with the stress so shuts down. As discussed, this stress could be a big thing such as sexual abuse, a major accident or the sudden death of someone close to you but it could also be as a result of dealing with a lot of smaller stressors. People who believe in being strong and pushing through things may not realise just how much pressure they are under. Take a moment and really think about your life so far. Write down all the things that have been difficult, even if you coped just fine with them at the time. To use a well known quote, developing NEAD is not a sign of weakness but of trying to be strong for too long.
Anger

It is perfectly natural to be angry. It may have taken a long time to be diagnosed and you may have been wrongly treated for epilepsy. You may feel that it is very unfair that you now have to deal with NEAD. The diagnosis may also bring out the anger that you feel over the traumatic event that caused it; the anger that you may have been keeping a lid on for years. Anger is an emotion that we are taught to keep under lock and key from a very young age. When a toddler throws a tantrum in a public place such as a supermarket, onlookers will tut and make comments about the child’s parents.Obviously, we can’t all be lying on the floor kicking and screaming but learning to recognise anger as an emotion in ourselves is important. So, let yourself feel the anger. The important thing is not to let the anger take over. Don’t let it become all consuming so that you end up lashing out at your loved ones. CBT can be very helpful for working through feelings of anger. If you are on a long waiting list to see a therapist, there are things you can do yourself to help you cope with anger. Mindfulness techniques, relaxation and breathing exercises, listening to music, going out for a walk can all help. Feel the anger but learn to let it go.
Depression

NEAD can affect all aspects of your life including your job, your family and your social life. You may feel that your life has changed beyond all recognition or that you are a burden to your family. You may have to leave a job you love and you will more than likely have to give up driving. If you are having a lot of seizures, you may end up not wanting to go out of the house which in turn leads to feelings of isolation. It is not surprising then that you feel depressed. However,with the right treatment, your seizures will be much better controlled and may even stop altogether, so there is light at the end of the tunnel. In the meantime, you need to find ways to cope with your low feelings. You could start by talking with your GP to see if medication would be helpful to you.If you are feeling really bad and feel you just can’t cope any longer phone the helplines of organisations such as the Samaratins (08457 90 90 90) or go to your local hospital.

You can fight your way out of depression.Rather than focusing on the things that you can’t do, find things that you can. This may be the perfect time to learn a new skill whether it’s a craft, a language, a sport or something else. Don’t let yourself become isolated. Make sure you leave the house every day even if it’s for a short walk to the shops. Develop a routine and make sure you get enough sleep. Exercise of any sort is a great way to beat depression with walking outside being one of the best. If you are worried about having a seizure, ask someone to come with you. Yoga and Tai Chi can be very helpful and if you don’t feel able to go to a class, find a video online and go out into your garden to try it. Helping other people is a surprisingly good depression buster. You could volunteer in your local charity shop for a couple of hours a week, get involved in community activities, visit the elderly or become a telephone befriender. There are charities and organisations across the UK who are crying out for the skills you have. If charity work isn’t your thing you could write a blog, create your own YouTube channel, start a small business selling things on Ebay or do an online course in something that interests you. New skills will lead to new and exciting possibilities.

Fear

Having seizures is a frightening thing. Your body is doing things that are beyond your control. You may be aware of what’s happening but unable to do anything about it. That feeling of fear then leads us to feeling frightened about having another seizure, which leads us to feeling very stressed, which may lead to that fear coming true with another seizure. It’s a vicious circle. If you have a seizure in public, you may be frightened it will happen again and so you don’t go out. Our family and friends can make things worse with their fears for us feeding our own fears or their attitudes making us fear that they will leave us. It’s frightening enough having seizures but even worse for family and friends who have to stand by and watch you, knowing there is nothing they can do to help. Loved ones may be tempted to wrap us up in cotton wool, not letting us do anything for ourselves. They may also do the opposite, telling us to “pull ourselves together” or worse.

Breaking out of that cycle of fear is crucial to getting the seizures under control and getting our lives back. Getting the correct diagnosis can really help. Once you know it is NEAD, you know what you are dealing with. Learn to recognise when your fear level is rising (mindfulness is very helpful for this) and take immediate steps to get it under control. Relaxation techniques, distraction or just talking about our fears can all help to calm them down. There is a quote about “face the fear and do it anyway”. This doesn’t mean that you should go out and leap off a tall bridge attached to a bungee rope (unless you really want to)! Instead, take small steps to overcoming your fears. Push yourself just that little bit further every day. Don’t let your family mollycoddle you but do accept help when you need it. Learn as much as you can about NEAD and encourage your family and friends to do so too. Fear can make loved ones say and do some pretty horrible things. Try to understand that as best you can and encourage them to talk to someone about it.
Hope,acceptance,happiness,joy…

Your relief at finally putting a name to the seizures you have been having may turn to disbelief, to denial, to anger or depression. You may think things like “why me?” or “the doctors are wrong, I’m a strong person, I can’t have a mental health problem!” You may find that friends and family who have been very supportive of you up to this point change their attitude and make unhelpful remarks. You may be worried about how it is affecting your life, your job, your relationships. One of the reasons that cognitive behavioural therapy (CBT) can be so helpful is that it allows you to deal with this flood of emotions and work on ways to regulate them.There is hope amongst the darker feelings.
The day will come when you start to feel better. You may never be completely seizure free but most people can get much better control and have far fewer seizures than before. New research is being done all the time into effective treatments for NEAD and more and more health professionals are learning about it.All the negative emotions mentioned above will start to recede and the positive ones will come to the fore. Each of us is different. Even though we are on the same journey, we are taking different paths so only you know what is right for you. Happiness is making the most of what you have, getting the best out of each moment and learning to accept the things you can’t change.

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