I have narcolepsy. It's not something I talk about a lot, especially not online. Because I don't talk much about it, it seems like the people closest to me don't really consider how it affects me. For example, my husband frequently becomes frustrated when I say I'm too tired to do something. Take a recent Saturday for example. At 7:00 AM, my stepdaughter and I met my sister, parents, and some extended family for a two mile charity walk. Afterwards, my husband, stepdaugther, and I went to the beach and took the jet ski out. The following morning my family met up at 9 AM for a Father's Day breakfast. We all went to church afterwards. As church let out, my sister mentioned that she and her husband were taking my nieces to the water park. She invited us to meet them there. My husband and stepdaughter went but I just couldn't do it. I went home and napped for two hours. When I got up, I finished doing laundry and went to the grocery store. Later in the week, my husband commented on how active my sister is. He said he wished I could be that way instead of only doing "one activity per weekend." A couple of weeks later he told my stepdaughter that I'm boring because I never want to do anything. He didn't understand when I told him his comment hurt my feelings. "You don't like to do anything," he said, as if stating a fact.
It bothers me. It's not that I don't want to do things. It's just that I know myself. I have a good idea of what would've happened if, for example, I had forced myself to go to the water park that day. I would have been extremely irritable (because I was tired) and unpleasant to be around. I probably would have wanted to go home well before everyone else was ready. I would not have had the energy to do laundry and go to the grocery store when we got home, even though these things had to be done and no one else was going to do them. And I would have been exhausted at work the following day and struggled to stay awake. It's possible I might have fallen asleep at some inopportune moment, such as when driving to work on in the middle of a session with a patient.
I have no idea if everyone with narcolepsy has the same struggles. I don't know anyone else with narcolepsy so I have no one to compare myself to. (Incidentally, I have had two patients with narcolepsy over the years but I didn't think it was particularly appropriate to discuss my experiences with them). I can't say whether or not my experiences are "normal" or "typical." I do the best I can and I try not to dwell on my limitations. Dealing with it is frustrating but I am grateful that things aren't worse - I know they could be. I wonder, though, if there isn't some way to help the people closest to me understand without making it seem like I'm throwing myself a pity party.