Starting Hard Conversations

I’ve been living with narcolepsy since my college years. It was then that personal relationships with other people suddenly became much harder to maintain. I lost a lot of friends when I suddenly couldn’t keep up with the others!

Accommodations and understanding are difficult to find

For this reason, narcolepsy symptoms can be isolating. It doesn’t help that awareness surrounding narcolepsy is either grossly misinformed by mainstream media or nonexistent. Not to mention the fact that accommodations and understanding surrounding disabilities can be difficult to find. I’ve been living as a hard-of-hearing person since I was born and have struggled to find accommodations and acceptance for this disability my entire life. Adding on narcolepsy makes for extra hurdles.

Overextending myself leads to complications

As a person living with narcolepsy, boundaries are important for me. Consistently over-scheduling myself as a chronically ill person results in health complications. For example, the last time I significantly overextended myself, I ended up getting shingles... for 4 months! I am still suffering from complications, including “flare ups” that happen when I end up overdoing it. When a flare-up happens, I get a low-grade fever, malaise, and am forced to rest in bed for weeks to recover. It is not a fun cycle at all.

For these reasons, I’ve had to learn to set boundaries when it comes to my condition.

Initiating conversations about boundaries with narcolepsy

It can be scary to initiate these conversations with others. I’ve lost people that did not understand or respect my narcolepsy symptoms as severe and uncontrollable.

It may be tempting to push my own boundaries in order to maintain peace and connection in the relationship. However, this is simply not sustainable. Since I care about the people in my life and want them to stay in my life for a long time, I have to set boundaries in order to make sure that I can fully show up in our relationship without getting burned out and, ultimately, resentful.

These are some ways I try to approach conversations about my limitations as a person with narcolepsy, in order to preserve the connection:

1. Stay positive

I like to start out by explaining, “I’d like to see you. However, I am unable to due to...” before getting into my narcolepsy symptoms. This way they know I want to see them but am simply unable to. I also try to keep the conversation light, and use humor if I feel comfortable doing so.

2. Act interested and validate where appropriate

Sometimes the other person may express feelings about my limitations. I try to listen to their point of view and not interrupt them when they are speaking. I try to validate the other person’s feelings.

However, it is important to note that my narcolepsy limitations are not within my ability to control... therefore, it is not my responsibility to hold guilt or shame over them.

3. Be gentle

For a while I got so used to people not understanding my symptoms or using them against me. It got to the point that I began starting out these conversations from a reactive and defensive standpoint in an attempt to maintain my boundaries and make up for the extra shame and frustration I still feel about my condition and the people that have pushed me away because of it.

I’ve since had to learn to start out with a gentle and easy manner in order to keep from hurting the people I love who are more understanding than people have been in the past and just want the best for me.

How do you start up difficult conversations surrounding your narcolepsy symptoms? Share your tips and tricks in the comments below!