How I Start Difficult Conversations About My Rare Disease

When living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn how to say "no" to people. This isn't easy for me, especially when I really want to say "yes!"

For example, I don't often go to events at night. When I am overly tired at night, I can't safely get myself where I need to go, socialize, or do anything else. As you can imagine, this makes socializing difficult!

Living with narcolepsy can be lonely

Not many people understand our conditions, and only a few are willing to be empathetic towards our needs. It can also be lonely because of the physical limitations we face.

As a person with narcolepsy, I am constantly in need of naps. I can't walk, go anywhere, or do anything for too long without needing to find a safe place to rest.

If I overdo it too many days in a row, I can easily find myself in bed with a low fever for a few weeks. Having to stay home alone, staring at my own four walls for too long, can really feel isolating.

Being open about my narcolepsy symptoms and limitations

This is why it is so important that I am able to talk to the people in my life about my narcolepsy symptoms and limitations.

It builds our connection when we are both empathetic and understanding of one another. It can also result in both of us getting our needs met. This doesn't mean that starting this type of conversation is easy, though!

How I approach difficult conversations about narcolepsy and boundaries

These are some ways I try to approach conversations about my limitations as a person with narcolepsy. They help preserve the connection and make the conversation a bit easier on both of us:

1. Be gentle

It can be helpful to start out with a gentle demeanor. Because of my past experiences with people, I can come off as stoic or reactive when discussing my boundaries around narcolepsy. That makes it harder to connect with people who are truly understanding.

Therefore, I make sure to remind myself to be gentle when starting these conversations.

2. Validate what I can

If the other person expresses emotions, such as disappointment, I make sure to validate them. However, it is not my place to hold shame or guilt over my limitations.

3. Stay positive

I like to focus on the fact that I enjoy the person's company and like being able to spend time with them. When I follow up with, "However, I need a break this weekend to rest," my intentions become clearer.

I often have to cancel plans due to my narcolepsy symptoms. It's important to me that the people in my life know it's due to my own illness and not because I don't want to spend time with them!

How do you approach conversations about your limits with narcolepsy or another rare disease? Any tips or tricks you can share with our community? Tell us in the comments below!