I would tell myself not to feel so guilty when I was wanting to sleep a lot, that it wasn’t because I was being lazy or not wanting to be social, it was because I was actually tired.

If I could travel back in time, I would tell myself to persevere and to just keep moving forward. When I was first diagnosed, I was so thankful to be diagnosed finally, because I knew that there was a problem. I cried happy tears when I found out that I did in fact have narcolepsy. But I would just say if there isn’t a cure… So I was hoping back then that they would be able to treat it so well that I wouldn’t have symptoms or issues with it anymore, and that’s just not realistic. There isn’t a cure, but there are treatments to make it manageable. I would say, now I feel like it is manageable. It impacts things, but I’m able to do much more than I could before treatment. So I would just say, hold on to the ride, it’s going to be kind of bumpy, but you’ll get there.

I would tell them that it gets better. When I was first diagnosed, I was kind of upset. It was kind of life-altering. But with treatment, I didn’t realize all that I could do. And I was in college at the time and I was always a good student, but after I got diagnosed and was put on the Xyrem, my grades significantly improved and I got 4.0s in college. It just helped me get that extra step to be me, extra pep in my step, and helps me to be kind of somewhat normal. I mean, I’m still tired, but it does get better with treatment.

If I could go back to my 25-year-old self and tell them… Give them advice about things I know now is, “It’s going to make your life more difficult, but you’ll be OK. Just limit your activities.” And I’m pretty lucky that I get to work, so I’m not real severe. But the other thing I would tell myself then, I didn’t have any cataplexy at that time but I do now, is to, “Take your time when you’re in a hurry or you feel rushed. Just slow down.” When I hurry or I get rushed, I tend to experience the cataplexy a lot more. Or if I’m startled by something that tends to make my coordination really bad and I’ll trip and fall and things like that and that’s what it does to me. So, my advice would be not to get in a hurry and that’s how you get hurt. Now that I’m older, I’m starting to feel like I have less energy to do things, and I just don’t feel as easy to manage it as I did when I was 25. But I’m just feeling tired more often now. And so, that is probably what I would describe.

I don’t have much to say because it was only a few months ago.

Advice I would give them is, get this checked. I thought I was just tired from running around doing other activities, but I didn’t know it was narcolepsy. And if I’d known that when I started working, I think I would have been more successful to deal with it, so that’s why I’d go back and tell myself, get that checked.

I would say if I was able to go back as I guess, as a young person that my education would be impacted. I think my life choices would be impacted. And to know that I could have had treatment for it. My maturity level would be impacted.

If I had to get back in time and talk to the me prior to my diagnosis or right afterwards, I would tell myself to be patient, that finding something that works is a real individual process for each individual. For narcolepsy especially, it seems there’s definitely not a one size fits all approach, and I think a lot of the medications that are used are sometimes used off label. So you know, I think it’s key to find a physician that is understanding of the disease and that really also understands that this may take a while to find what works. I was really fortunate in that, but to be patient that oftentimes the first thing you try is not going to be the one that’s going to be the answer, and sometimes it takes finding multiple things before you’re able to get to a place where you can at least function on about an 80% level compared to how you did before you were diagnosed and before you were sick.

I would tell them that they really have to find a doctor that works well with them. You have to find that personality that really matches yours. Somebody who’s truly caring, who will take the time to listen to you, and who really understands the disease. I feel like a lot of doctors really don’t understand. They also label us as drug seekers because yes, we do take stimulants. So, to some, it might be concerning if we’re on high doses or if we need to constantly change the medication. So, I think it’s very important to find a doctor who really understands the disease and how these medications affect us. Some work, some don’t, therefore, it’s important to find somebody who also has the time and who understands that we know we’re going to have to keep changing these prescriptions, and sometimes it’s changing them throughout the month or a combination of different things. I also think it’s important for somebody to know that you have to speak up. If you do not tell them how you feel or that the medications don’t work or you’re having these symptoms or those, that they really can’t help you unless you tell them. I also will say that it’s important to accept the condition because medication is only going to do so much. You also have to make lifestyle changes in adjusting your schedule, scheduling naps, making sure you get enough sleep at night, making sure you exercise, and your diet. It’s also important to understand that the medication only does so much. You’re never going to be a hundred percent what you used to be. If you were always fine before you were diagnosed, to know that you’re never going to be back to that. You’re always going to be tired, even with the medications. They just only do so much. So, it’s important to understand that it’s not going to fix you.

You can’t do it all. You can’t be like everybody else because they don’t have narcolepsy. Pulling an all-nighter is not a good idea because you won’t bounce back from it like everybody else would naturally. Don’t worry about what everybody else is doing. Do you, and you’ll be fine. I would tell them that managing my condition, I feel like I am more in control and can know what to expect now that I’m on a reasonable medication regiment. I take naps at the same time each day. There is hope. There definitely is, it’s just a matter of keeping up with the routine.

I have only been diagnosed for a few months now. So it’s just new. There isn’t really any advice or anything I would do differently. I just wish that it wouldn’t have taken so long to be diagnosed.

I had been telling my former doctor for decades, I was exhausted. I was diagnosed with sleep apnea, which they now found out I don’t really have. And still, I was exhausted, until my new doctor sent me to another sleep clinic where I was diagnosed. I wish I complained louder and screamed more because I didn’t feel I was being validated in my thoughts until I received this new diagnosis last year. And I felt like this since I was a teenager and I’m 51 years old. The sense of relief brought tears to my eyes because I knew I had something wrong with me. And now I’m just getting a little more sleep and this medication has made me a new person. I feel like a completely different person.

I would recommend to start treatment sooner than I did. Specifically, treatment such as baclofen or Xyrem to help sleep at night.

It makes a lot more sense when I was first diagnosed of what was going on because I didn’t understand the daytime sleepiness. I probably wouldn’t have drank as much caffeine as I did when that happened because I was trying to make up for it. I would go back and not drink nearly as much caffeine and probably had gone to a doctor earlier than what I had, had I known what was the problem.

I would tell my younger self to listen to your body even more than you think that you are. Stop pushing yourself to the point of complete exhaustion, you’re putting yourself and others at risk. Even though that you have not had any accidents from your condition does not mean that it is any less terrifying when you drive after a long shift at work with the commute. Go ahead and cut back on your hours. Read up on the ADA, get extremely familiar as soon as possible with the Job Accommodations Network and what you are allowed to ask and what is required of your employers to put in place for accommodations on a federal level.

I would say to myself, back then, to know that things can always change and that there are often stages and phases. That doesn’t mean that things will necessarily change for the better. Things could get worse. As overtime, my condition has deteriorated, my functioning has gone down. But to know that, and to never despair in whatever is happening at that time, because things do change, circumstances change, family dynamics change, and that always affects everything. Medications will change. I think it’s important to say to somebody who’s starting out to know that, even though things will change, that’s also a good thing. And just to be prepared, things will not stay the same, but while one thing might get worse, something else may improve. Because things are always evolving and changing.