Cataplexy: Is Seeing Believing?

Narcolepsy is a chronic, invisible illness. This means that many of our symptoms are unable to be seen by the outside world. Therefore, people can unintentionally forget its existence, which unfortunately only adds to the struggles of living with the condition.

I experienced a situation a few weeks ago that made me ask myself an interesting question: Do people have to see your disability to believe it?

Cataplexy reared its ugly head again

A few weeks ago, my sister, my niece, and I decided to go on a weekend vacation to Algarve, Portugal for Carnival. We got a really nice surprise when one of her best friends decided to join us with her 2 children.

Usually, I’m very good at taking my medication and always remember to take them with me when I travel, but this time I completely forgot!

I’ve been taking venlafaxine (Effexor) for the last 3 years to reduce cataplexy episodes. It only took 3 days without it for the cataplexy attacks to rear their ugly head again.

My sister's friend witnessed my cataplexy attack

On the way to a restaurant, I suffered multiple cataplexy attacks inside the car, and as much as I tried, I could not snap myself out of it.

It was the first time that my sister’s friend had ever witnessed a cataplexy attack. She reacted in a way we’ve probably all come to expect — asking questions that I couldn’t answer, with subtle panic and worry in her voice. Understandably, she obviously had no idea what she was supposed to do.

Luckily, my sister has become versed in these situations and was able to give her the reassurance that I could not.

Answering a flood of questions about narcolepsy

What happened after this incident quite honestly took me by surprise!

As we finally sat down for dinner, my sister’s friend began flooding me with questions about narcolepsy. She wanted to know all about cataplexy and how it worked, how often I experienced it, and how I was managing to cope with my condition. As I am extremely comfortable with speaking about narcolepsy, I had no problem answering her questions and even welcomed them.

Every time the subject deviated into another topic, I was surprised once again when she returned to asking even more about narcolepsy. She seemed quite stirred by the experience of witnessing my cataplexy attack, and it was as though she had only just discovered that I lived with a serious chronic illness!

I felt seen for the first time in a long time

As she continued to ask questions, I went on to tell her about the advocacy work I do to raise awareness and educate people about the seriousness of my condition. To my utter shock, she then asked me if it was okay if she shared my Instagram page and blog! I said yes, of course! The more awareness, the better! Three days later, I had 18 new followers on my Instagram page that were all connected to her.

I’m not sure whether this experience is a normal occurrence for other people or not, but I can honestly say that for me it was a pleasant first. I think that it was the first time in a long time that I truly felt seen by someone outside of the narcolepsy community.

So, it made me wonder... do people actually need to see to believe?