First of all, thank you for opening this post.
While followers of this blog might know I am autistic, you might not know I’ve had seizures for ten years as well. They developed long before we had an inkling that autism was a possibility, and I was diagnosed with non epileptic seizures. We now know that the mechanism of my seizures is linked to my inability to process emotions in a neurotypical way, and how my body deals with stress and meltdowns.
Unsure how to help people with seizures? No fear, I’m here.
- Ask and listen. We know our seizures intimately and can share with you a wealth of information about our own experiences. Ask about their triggers and ask about when to call emergency services – ambulances are expensive and often unnecessary. My line is call an ambulance for me if I’ve clearly injured my head. For epileptic people, you must call an ambulance if their seizure lasts for more than 5 minutes.
- Do your research about epilepsy and non epileptic seizures now, even if you don’t know anyone with them beyond me on the internet.
- Spend some time thinking about how your workplace could be a more seizure friendly place. Put posters up in your staff room (see below).
- Stop using “fits” and “seizures” as slang in your language. It is hurtful to us to hear our conditions be used as a joke. That said, I feel people with seizures are allowed to refer to their seizures however they want as being lighthearted about it can help.
- Learn the differences between seizures (helpful infographic at the end). Not all seizures are convulsions; some are slurred speech, spacing out, being confused. Every single person who has these type of seizures has a story about people brushing them off as drunk when they were actually having a seizure and needed help.
- Do not, I repeat do not put anything in a seizing person’s mouth. A bitten tongue will heal, broken teeth will not. They might choke. I have to tell this to people constantly.
- After witnessing a seizure that didn’t lead to an ambulance, give the person some water, perhaps a snack and wait for them to tell you what to do next. Some people might be fine afterwards, some may need to sleep for 14 hours; it depends on the circumstances and person. Just make sure you let them decide. Seizures rob us of autonomy and we desperately cling to what we have.
- Try not to feel weird about asking questions. They are a part of our life and as long as you don’t ask something offensive, it’s probably fine. Just be aware that I’ve heard all sorts of suggestions for curing my seizures such as yoga and pregnancy, so forgive me if I eye-roll at the 900th time someone suggests mindfulness. In fact, unless you are a seizure haver who tried a thing that worked don’t suggest anything.
- Be prepared for an emotional response you didn’t expect. Some people will be mildly frustrated, some will be incredibly upset. The seizure you witnessed could be the first one they have had for years. I am really chill about them now and usually spend my post seizure time asking if people around me are okay, but back in 2011 I had five seizures in a week after having none for three and a half years. I had been a research diver and had to officially hang up my fins. I was devastated. Be gentle with us.
- Just because seizures aren’t epileptic doesn’t mean they aren’t real. Epileptic seizures are caused by electrical misfiring in the brain. Non epileptic seizures can be caused by a whole host of different things including blood pressure, blood sugar, emotional state. Historically, all seizures were thought as fake or madness; more recently non-epileptic seizures carried this stigma because doctors couldn’t see electrical spikes on an EEG. Lots of people have these seizures, including epileptic people. They are often called Non Epileptic Seizures (NES) or Non Epileptic Attack Disorder (NEAD). Old names were “Hysterical Seizures”, “Psychogenic Seizures” or just faking.
- Photosensitivity isn’t common to all people with seizures, but a flashing broken light is easily fixed. Encourage phasing out of strobe lights where possible and heavily sign post where they are used. Post on social media films or theatre that use it; this grapevine or heads up is incredibly important and could have prevented my having a seizure in a cinema lobby after Hunger Games part 3. Strobing bike lights make evenings impossibly difficult for people with seizures; yes they may be using a frequency not commonly prone to causing seizures in epileptics, but that research doesn’t cover people with non epileptic seizures, and you can be certain it could make an autistic person feel incredibly ill too.
- Be mindful of gifs and videos you share on social media. They autoplay a lot of the time and a trigger warning is redundant if it has already flashed someone. Also be aware that people send strobing gifs to people with seizures who talk about it on social media; find them, report and tell twitter people their ID so they can preemptively block for their safety.
Memorise these images! Print them out and pin them up in your office, school, library, anywhere! Share them on social media, not just for Purple Day, but regularly throughout the year so people remember!
Thanks buns. Stay safe ❤