How NOT to React to a Cataplexy Attack

Cataplexy is a sudden, brief loss of muscle tone often triggered by strong emotions.¹ If you have never witnessed a cataplexy attack, it can be difficult to describe. Despite suffering from cataplexy myself, I was quite stunned the first time I experienced watching someone else have a full-body cataplexy attack.

So, even those of us living with cataplexy may be taken aback by an involuntary and unexpected reaction.

I, myself, have had some unfortunate experiences during cataplexy attacks due to others not knowing how to react and instead exacerbating the situation by innocently trying to help. So, hopefully, these next tips will help so that you know exactly what you should avoid doing if you witness someone having a cataplexy attack.

If you see someone having a cataplexy attack...

Don’t panic

First and foremost, keep calm. When someone collapses or loses control over their muscles, the instinct may be to panic or assume the worst. However, it's crucial to understand that cataplexy attacks, while alarming, are not typically medical emergencies. Panicking can escalate the situation, making the person experiencing the attack more stressed or embarrassed.¹

Avoid overreacting

It’s easy to overreact with a list of unnecessary actions. People might think they need to call emergency services or administer first aid. In most cases, cataplexy attacks are brief and do not require emergency intervention unless the person is injured during the fall or the attack is uncharacteristically prolonged.

Ask calmly if they need help instead of assuming immediate drastic measures. Ever had someone freak out when you accidentally knocked over a glass of water? Now multiply that by a million when it comes to a cataplexy attack. Freaking out can make the person feel embarrassed, anxious, or even more vulnerable. So, keep calm and carry on, folks.

Don’t make assumptions about their awareness

During a cataplexy attack, the person is usually fully conscious, even if they're unable to speak or move. It’s inappropriate to speak about them as if they're not there or make assumptions about their state of consciousness. Speak to them as you normally would, reassuring them calmly if they appear distressed.

Do not record or take photos

In the age of smartphones and social media, there’s a misguided temptation to document everything. A cataplexy attack is a deeply personal medical episode, not a spectacle. Filming or taking photos not only violates the individual's privacy but can also increase their distress or embarrassment.

Do not laugh or make light of the situation

While some cataplexy attacks can be triggered by laughter or excitement, it’s critical not to treat the situation as a joke. Laughter or light-hearted comments about the episode can feel deeply humiliating to the person experiencing it. Empathy and discretion are vital.

Avoid moving them unnecessarily

Unless they are in danger (e.g., in the middle of a road or at the top of a staircase), I feel it’s best not to move someone having a cataplexy attack. Instead, protect their head from hitting the ground if you can do so safely, and wait for the attack to pass.

Don’t ignore their needs after the attack

Once the attack subsides, the person may feel tired or disoriented. Offer assistance in getting to a safe place or finding a seat. They might need a moment to collect themselves before continuing with their activities. Ask how you can help rather than walking away or ignoring their needs.

Takeaways

Understanding and compassion go a long way. If you witness a cataplexy attack, remember that your reactions impact the well-being and dignity of the person involved. 

It's vital that you understand that experiencing a cataplexy attack can make the person feel extremely vulnerable, so the important things are to be supportive and to just be there for them. It's the best thing I think you can do.