Narcolepsy: Don’t Judge a Book by Its Cover

"Don’t judge a book by its cover" is one of the most cliché phrases, but it’s still one of my favourite sayings because it relates to invisible illnesses so perfectly. Just because someone looks fine, people assume that they are. Just because someone looks healthy, people assume that they are.

In our community, we always talk about misconceptions people have about narcolepsy, such as, "Narcolepsy affects everyone in the same way," "People with narcolepsy collapse without warning," "Narcolepsy is extremely rare," or "People with narcolepsy have no trouble sleeping."

However, there are also more general assumptions that people make that they may not even realise can be harmful.

'Resting will make you feel better'

This statement alone implies to me that whoever is saying it doesn’t understand narcolepsy at all, and possibly doesn’t consider it to be a serious condition.

After 5 years of being diagnosed with narcolepsy and cataplexy, it still shocks me when people say this to me. I think to myself, "Have you not been listening to anything I’ve said?"

I realise that, in most cases, people don’t mean anything by it; however, it can be exhausting to have to keep repeating myself and explaining that resting doesn’t always work for me.

'If you are enjoying yourself, then you must not feel that bad'

People have no idea of the effort we make sometimes just to get up, get ready, and put a foot out the door. Even more so, they have no idea of the effort we exert in certain occasions but never let show. We do this for us as much as we do it for the people we are with.

We can’t allow this condition to rule our lives, and we don’t want to become known as someone who is always complaining.

People assume we have consistent medical support and guidance

This, in fact, is extremely far from the truth. Finding a good doctor with expertise in narcolepsy seems to come down to pure luck — that is, if you manage to find one at all.

Living in Portugal makes this already challenging task almost impossible due to lack of awareness, but even in countries with the highest awareness, it still proves to be extremely difficult.

'You just need to have mind over matter'

I can’t overstate how many times I’ve heard this. It’s probably the most triggering one, too.

As much as I do believe that your perspective has the ability to shape your reality, I also believe in science, and unfortunately, you can’t will your brain to produce hypocretin.

I understand that people want us to be positive, but it can feel somewhat condescending.

An important lesson to keep in mind

Obviously, the last thing we might want is for people to feel as though they have to walk on eggshells around us, but that’s why it’s important to communicate your feelings.

It’s also an important lesson for us to keep in mind, too. If we don’t want others to judge us by what they see — and especially by what they don’t see —, then we shouldn’t do the same to others, either.