A question for the Narcolepsy (Type 1) Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My husband is definitely my biggest supporter. He is really great about just being understanding when I need to take a nap. When I start to get sleepy out in public, he’s very helpful. Him, my mom, my sisters, they’re all very, very supportive. I would say my doctor is very supportive too. He is… If I need him, he always calls me back when I need to adjust something. He gives me really useful information, which I appreciate. He takes the time to answer all my questions. I would say at this point, those are my biggest supporters.

My mom has probably been my biggest supporter. She’s kind of just been there as like a sounding board to help me when I need to vent about having narcolepsy or anything else that comes along with it. She was also diagnosed a little bit before I was, which is how I figured out that I had the same condition. So, she’s been fantastic. My coworkers have been great, allowing me to take a nap if needed and then coming back to work so that I can be more alert and I can survive a sleep attack and not fall asleep at my desk or my computer. My husband has been extremely supportive as he’s helped me with the medicine at night and helped kind of deal with the stuff that comes along with that. Sometimes I’m out of it. I forget things. I have conversations I don’t remember, those sort of things. I couldn’t have done it without all of them. Yeah.

Two of my biggest supporters would be my husband. He’s been with me since I was 18. I would say, my dad was also a big supporter of me since he had to … My dad actually also had the same condition that I did. He was just, my husband, he’s just always there to help me get things done that I don’t have the energy to do. He does a lot of the driving, things around the house. My dad just, he understood what it was like. He had had it, and then I got diagnosed with it later on. Of course, doctors are always supporter of you. The perceptions and things that people say, that I don’t like, is that people think that because you have narcolepsy that you’re lazy and that is not the case. It’s just that you are tired. Your brain tells you to sleep at times that aren’t typical. That, basically, one of the worst things. I do have a lot of people that say, they know that you have narcolepsy. They’ll say, “Well, I’m tired all the time too. I just take a nap.” I’m like, you have no idea what it’s like, to really have a problem with that. How could you say that? You don’t even know what it’s like to have narcolepsy. One other thing I can’t stand is, sometimes when they put movies out about it, or they have a character that has it in a movie, or they’re just kinda making fun of it, they make it look so exaggerated. That just drives me crazy. I can’t stand that. As I’ve dealt with this for 22 years and I have less and less tolerance for that.

My animals, I turn to them for comfort and enjoyment. I feel isolated from people. It seems like they don’t quite understand where I’m coming from or get it, and think they can relate but they really don’t.

My biggest support is my wife. She makes sure I take medication and she also makes sure I get rest. That’s the major concern is making sure I get rest. So she’s been my biggest supporter and also making sure I go to my doctor’s appointments, my annual checkups and all that other stuff.

My big supporter is my husband. He knows when I need to take a nap, he is respectful of it. He knows how important it is to keep me on the timeframe that I’ve allowed, and that he understands how my mood can be impacted if I’m not able to close my eyes for 20 minutes and just feel refreshed.

I’ve been really lucky to have an amazing primary care physician who has walked me through this process and got me the referrals I’ve needed and been willing to work with me to address both the day and night issues when it comes to narcolepsy because it affects not just your daytime sleep, but your nighttime sleep as well. And when it comes to a support system, my partner has been incredibly supportive and understanding of the disorder and how it can happen and what goes into it, as well as my younger, well, my son, he’s only 10, but he’s been really supportive. He used to think it was funny when I would just fall asleep, but now he understands that it’s really, really life-altering and can be. And he is, I think, much more pleased to have a mother that is present and conscious on a daily basis. So I would say those three have been the most supportive, but it’s still really difficult. There’s just people that don’t understand it never will. And even if you tell them that that’s your diagnosis, you’re going to get some eye rolls because it’s just not… It’s like people with fibromyalgia suffer from the same thing, if it’s something that people can’t see as a physical disability, it’s really difficult to help people understand unless they see you go through a spell, and once they see you go through a spell, they get it.

I would say my biggest supporters are my doctor, my group of friends on Facebook. I’m a part of several narcolepsy groups, as well as I have created my own nonprofit for people with narcolepsy, PWN4PWN, where we help support others that have just found out, see what types of treatments that are out there, let them meet other people with narcolepsy. Just be able to realize that they’re not alone.

The biggest supporter is my husband. We have adjusted our work schedules so that he leaves after I do, in the morning. So he started his work schedule later. So he makes sure that I wake up and I’m ready to go to work, and then he goes. Because before, he used to leave before me and I would sometimes not make it to work because I would go back to sleep without even knowing it. I would turn off my alarm. I’ve also changed my schedule. I was working night shift for awhile and that was very hard with having narcolepsy and trying to stay awake and then having to flip back for things like life things, events and get-togethers, family things, to be able to function during the day. So that was very hard on me so I had to change my schedule to day shift from night shift. Also, making sure that I have my appointments, that I don’t miss them. He makes sure. He puts things into his calendar. He also sometimes has to remind me to take my medication before I take my afternoon nap, that sort of thing. And my previous doctor was probably my second biggest supporter. He recently retired, so it’s been very hard. He actually really understood me and my condition. If I told him something didn’t work, he knew. He didn’t question it. He would just work with me in figuring out what would work and what I was willing to try. And really, my parents because they know how I was when I lived at home. So they never questioned my condition. They don’t give me a hard time about it. They just understand and know how it is to have narcolepsy.

My biggest supporters have been my family, my support group on Facebook, and some of my friends who understand my condition. My one friend reminds me that I can’t do it all and that I need to make sure that I take my naps when I’m supposed to, so I can continue to function. So just having those reminders and having that understanding from them has definitely been helpful.

My husband and my two best friends are my biggest support. They constantly watch over me, call, text, make sure that I am okay. Tell me that I can get through this. Tell me it’s okay if I do need naps and if I need to rest. Tell me it’s okay if I cancel things because I am tired. If I need to… If we are out and I need to come home because I’m tired, they always say it’s okay. They don’t make a big fuss, don’t ever call me lazy. They’re just all-around okay with everything that… And, always support whatever decision I make.

My mother has watched me struggle with this since I was a kid. And she’s thrilled that I have the diagnosis. And my husband has struggled with this. And he’s been frustrated because he’s watched me take a variety of different kinds of medication and drink coffee and go through struggles with my weight and nothing ever worked. And he’s at peace also because I finally have an answer. It’s a question that could never be answered. I finally have my answer. And of course, my friend, because they don’t have to worry about me falling asleep when I’m a passenger in a car, I’m driving a car, we’re going on a trip if I’m sitting at the movies. We don’t have to worry about that anymore. My life has changed for the better.

My doctor is very supportive. He helps adjust the medication and is willing to listen when I have ideas that aren’t typical. My partner is also, they help, and she helps me wake up in the morning. She helps me go to bed at night. Yeah, that, I think those are the biggest two, my doctor and my partner.

I would say that my doctor is a huge supporter. He’s always asking me how I feel like it’s working, how many hours. He’s always willing to make changes if we need to, to make sure that I’m getting through the day. And also my husband, because he knows that I have it. So when I fall asleep, he lets me sleep for a little bit before waking me up. So those are the biggest supporters that I have and my husband off to picks up more around the house and does more things for me.

My sleep specialist, the doctor, the nurse practitioner, [PII redacted], I cannot give her enough props. My boyfriend that moved in with me to help with life. My daddy, my stepmom. Those are my heroes. They will even drive over an hour to come get me from work when I’m not able to drive on my own and they do that even without me asking. They just show up because they saw it on me before I went to work, the night before.

My biggest support is my husband. I’m very blessed. In the beginning, when I was first diagnosed, he did not understand narcolepsy. He did not understand why or how I was doing certain things or not doing certain things, and the frustration in not being able to do things that you feel like you should. But over time with a lot of education and research and online support groups, my husband has become my number one support. He advocates for me. He provides physical support around the house. He does all the shopping. He does a lot of the cleaning. He does all the laundry. Those are such huge burdens of mother of five, thank God, and there is a lot that goes into just getting everybody through every day. And he’s always there and always encouraging me, reminding me that I’m not lazy and I’m not copping out and just taking it easy and that I am important, I am relevant and I do a lot. He’s just always there with that constant encouragement and picking up the slack. And really, I don’t think I would be able to do whatever I do without him.