Information about non epileptic seizures and Non Epileptic Attack Disorder.

What do you say when people say…

By on 3 July 2015 in General

Getting the diagnosis of NEAD is frustrating enough but trying to explain it to people and then dealing with their reactions can really push your blood pressure up! Most people are genuinely trying to help and be supportive, so take a deep breath and try some of the responses below.

“It’s all in your mind”
This can be one of the most hurtful things that people can say and finding a good response that doesn’t involve violence can be hard. Try saying something like:
“NEAD is caused by overwhelming stress and while the cause may be mainly psychological, the effects are very real and physical.” or
“My neurologist has studied medicine for many years and he says the seizures are real and he should know.”

“Stop faking”
This is just unacceptable! If anyone says this to you, walk away. If it is a loved one, point them to this website and others like it so that they can learn more about the condition. If it is a health professional, then file a complaint.

“You just need to push through it”
This is most often said by someone who has absolutely no idea what you are going through. The extreme tiredness that we often feel isn’t something you can just push through. The best answer to this is to point the offending party to the brilliant ‘Spoon Theory’.

“You don’t look sick/ you’re looking really well”
This is most often said when you are feeling your absolute worst and cringe at the sight of yourself in the mirror! It’s one of the great frustrations of having an ‘invisible’ illness. Some people may use the “you don’t look sick” comment in an accusatory way, making you feel as if you have to justify yourself. Many people with invisible disabilities are harrassed when they park their cars in disabled bays at supermarkets as other people think that they are not ill.

The response to these kinds of comments really depends on who is saying it to you. If it’s a loved one who knows you well, you can just explain that while you look ok on the outside, you feel awful on the inside. If it is someone you know slightly who says “you’re looking really well”, you have two choices: spend ages explaining your condition or just say “thank you” and let it go. If it’s an accusatory “you don’t look sick”, you can take some time to explain NEAD and point the person to the website. It is not worth getting into a big argument about it, though, as this will just stress you and may lead to you having a seizure. Sometimes the right thing to do is just walk away.

Have you tried (insert assorted remedies here)?
People who say this genuinely want to help. It’s always worth listening in case it is something that actually would help you. Changing your diet to eat more of x or cut out y are popular comments. The best thing to do is keep a diary of what you eat and when and see if there is any relationship with your seizures. Don’t go on any kind of fad diet without consulting your GP first. Suddenly cutting out all carbs for instance can stress your body and may lead to worsening of seizures.

Suggesting vitamin supplements is another popular comment. Unless your blood test results show a lack in any vitamins or minerals, taking supplements unnecessarily just leads to very expensive urine and may, in some cases, cause harm. Again, consult your doctor first.

Alternative therapies such as acupuncture, aromatherapy and reiki may be worth exploring but do be aware of any triggers you have (e.g. strong smells) being set off by the therapy. Always be aware of the placebo effect when contemplating a particular alternative therapy.

Other people’s remarks can be hurtful, but only if you let them affect you. Make it your mission to educate the people around you about NEAD and treat each comment as a teaching opportunity. The more we talk about NEAD and how it affects us, the more awareness of the condition there will be.

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