Communicating Narcolepsy Needs

Narcolepsy symptoms make life hard. And misunderstandings surrounding narcolepsy symptoms can make life harder!

Effectively communicating our narcolepsy-related needs is very important. Effective communication is important for bridging the gap between disabled people and our able-bodied-centric society. As we become more skilled in communicating our needs, I think we can in some cases improve the ways in which our narcolepsy-related needs are received by others.

4 ways I communicate my needs

Here are FOUR ways that I find are helpful in increasing receptiveness to my narcolepsy-related needs.

By being clear and specific

Rather than making general requests for accommodations, I like to focus on clear and specific examples of what I need.

For example, if I were to go on a coffee date, I would let the other person know that I need to be home within two hours. After just one or two hours of socializing, I am so exhausted that I start falling asleep uncontrollably.

Trying to communicate my needs during a sleep attack is nearly impossible. Words are difficult to find when you’re falling asleep. My speech even becomes slurred. Therefore, I try to communicate my specific narcolepsy-related needs before my symptoms become too severe.

Being clear and specific about my needs can help other people understand and accept them.

Utilizing “I” statements

Using “I” statements is important for communication that does not incite defensiveness in the listener.

For example, saying “I need a nap right now,” instead of “You never let me take naps when I need them,” is assertive but non-threatening.

Practicing (and watching for) active listening

Communication happens both ways. When you give your full attention to the other person during communication, you are telling them that their viewpoint and feelings matter. By asking questions for clarity, and validating the other person’s perspective, we create a safe environment for healthy communication.

It’s important to not only listen actively, but also to consider whether or not the other person is listening to you actively. If it seems like they are blocking you out, that may be a sign that they are not a very supportive person. When it comes to living with narcolepsy, having people around you that respect your narcolepsy-related needs is extremely necessary. (I personally consider it non-negotiable).

Choosing the right time and place for discussions

Like I mentioned before, trying to communicate my needs while in the midst of a narcolepsy-induced sleep attack is nearly impossible. I find it important to disclose my condition to people that I will be spending lots of time with, before we actually hang out. Communicating my needs before an event helps reduce surprise for the other person.

We are worthy of care

Sometimes there’s only so much we can do to advocate for our needs. Sometimes people are not receptive to seeing our point of view. Sometimes these people disregard our needs as frivolous. This can damage our own psyche, as well as our relationship with that person.

Ultimately, there is rarely a way to change someone’s mind if they decide that your needs are not important or valid. Personally, it’s the best I can do in these circumstances to escape as soon as humanly possible. There’s only so much energy I have available to allocate towards people to convince them that I am worthy of care.