Connor Millsom

Connor lives in Victoria and has type 2 narcolepsy (without cataplexy).

Sleepiness is something I have grappled with for as long as I can remember. Although I still enjoy a high quality of life, it is difficult for me to complete ordinary tasks like chores or work, and I try not to drive at night if I can avoid it, because I will begin to nod off. I also need to nap at least once a day, and I haven't yet been able to find a medication that works really well for me. Another — somewhat stranger — symptom of my condition is that I often find it difficult to know when I have been awake or asleep (for instance, when I take a nap); this is usually referred to as having poor sleep awareness and is common among people with narcolepsy.

Creating a methodical plan in partnership with a proactive, understanding, and open-minded doctor was key to identifying my disorder in early 2024. I would recommend this approach to anyone seeking clarity about the source of their own fatigue. Learning to live with narcolepsy has had its ups and downs, but I'm ultimately very thankful to have received some clarity about why I feel the way I do.

As a member of the Lived Experience Advisory Partners, I hope to contribute some ideas and provocations shaped by my experiences and those of my friends and family who have sleep disorders themselves. I am particularly interested in spreading accurate information about what narcolepsy actually entails (because most representations are not true-to-life) and improving the path to receiving an accurate diagnosis (because most people with sleep disorders report facing many barriers on their own journeys).