How I Start Difficult Conversations About My Rare Disease
Last updated: August 2023
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 for those cases when I really want to say "yes!"
For example, I don't often go to events at night. This is due to my inability to safely get myself where I need to go, socialize, or do anything else when I am overly tired at night. As you can imagine, this makes socializing difficult!
Living with a rare disease 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 or 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 4 walls for too long can really feel isolating.
Being open about my limitations
This is why it is so important that I am able to talk to the people in my life about my limitations due to my rare disease. It builds our connection if we are both empathetic and understanding of one another. It can 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 my rare disease
These are some ways I try to approach conversations about my limitations as a person with narcolepsy in order to 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 due to my condition. It makes it harder to connect with people who are truly understanding. Therefore, I make sure to remind myself to be gentle when starting out 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 to be able to spend time with them. When I follow up these statements with, "However, I need a break this weekend to rest," my intentions become clearer for the person. I often have to cancel plans due to my condition. It's important to me that the people in my life know that 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 due to your rare disease? Any tips or tricks you can share with our community? Tell us in the comments below!
How often do you run out of spoons?