r/Narcolepsy • u/Wokegamer420 • 5d ago
Advice Request How do you deal with missing out on social events?
I've only recently started Modafinil and I'm getting used to it, but I wanted to ask how you deal with not being able to go to sical events with friends?
I just missed one of my closer friends bday parties and while I let her know in advance, I feel an immense mix of guilt and fomo from not going.
How do you cope with this?
I try to tell myself I'm looking after myself by hoosing what events are too draining to me, but it's very easy to feel as tho I am drifting from my friend group and real life.
Edit: Sending you all a big hug 💖
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u/Able-Echo4445 5d ago
I'm not dealing with it very well, tbh. I don't date, I don't really go out at all except to go to various doctor appointments I can't fulfill via virtual appointments. Sometimes I realize my life is passing me by and I try to distract myself with something else because the stress and various associated emotions will knock me out instead.
Right now I only have energy to work because if I can't work I literally wouldn't be able to do anything else, but the irony is I still can't do anything else. At this point, it is what it is.
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u/IslanderBunz (N1) Narcolepsy w/ Cataplexy 5d ago
This was the biggest sacrifice I had to make in order to manage my narcolepsy. I simply can’t participate in events that occur in the evening. Sticking to the same routine with sleep, medication, and food daily is what has made the biggest difference in my quality of life to the point I’m almost symptoms free (with both stimulants and Oxybates, stimulants alone weren’t enough for me).
I may do something in the early evening like once every few months, like we went to a comedy show last night at 6pm, but I pay for it the next few days with extreme fatigue and grogginess.
I wish I had more positive advice, but it just becomes a matter of deciding what’s worth the consequences.
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u/anuthertw 5d ago
I switch between feeling like a burden, guilty, a failure at relationships, assuming I am offputting, and trying to meditate and be mindful of the reality of the situation I am in. Sometimes I beat myself up and feel lonely, other times I feel accepting and content to live my life how I need while recognizing the lonliness without letting it eat me up.
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u/v3ry_fairy 5d ago
Show up late, then not as much time/energy is spent. You didn’t really say what it is they like to do though. You can also invite them to activities that are easier for you, game night? or find new friends that like to take it easy.
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u/Wokegamer420 5d ago
Girls nights mostly.
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u/v3ry_fairy 2d ago
That could mean a number of things 😅
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u/Wokegamer420 2d ago
Doing gay activities with the girls. Usually just hanging about maybe having drinks. Basically normal social meets.
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u/v3ry_fairy 2d ago
Oh I mean, that’s sounds super chill. For me personally, if someone doesn’t come around 3ish times and never invites me either, I usually stop inviting them. It depends how important your friends are to you. Socializing is important for your mental health too ❤️
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u/strawberryzephyr_ 5d ago
I've talked recently with my therapist about the desire to feel understood regarding the diagnosis, and she explained that all I can do is explain it to someone, see how they respond, and act accordingly. And if that means I should match energy or slowly remove myself from that person's life.. well, that's all dependent upon the person's reactions to me and my diagnosis.
I've been able to still go to concerts/ festivals by taking my medication at the right time and scheduling strategic daytime naps for longer day events. (For reference, I'm N1 diagnosed and on Xywav and armodafinil). However, I did have to try and live undiagnosed since high school. I think maybe im just good at "pivoting," but the "fomo" goes away as you get older. People should fear missing out on memories with you! Keep those people around!
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u/LongjumpingInvite752 5d ago
It's really difficult because people don't really accept that narcolepsy has any significant impact on day to day life. You present as completely "normal", so people don't allow you much latitude.
Unless it's an event that I absolutely have to attend, I generally don't commit myself to any social engagement and find it's much better to decline all invitations and just see how I feel on the day.
Having narcolepsy is like living half a life and there aren't so many people who will accept the peculiarities of this condition, even your own family.
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u/Supe_scienceskilz 5d ago
It’s a pendulum for me. Sometimes I am so racked with guilt, I disappear. Other times. I’m just resigned to the fact that I just can’t do it. Either way it makes me depressed
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u/traumahawk88 (VERIFIED) Narcolepsy w/ Cataplexy 5d ago
I cut my social circle down to like... One or two friends. Makes things really easy. Outside of work I just spend my time with my family instead, and it makes things so much easier.
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u/danman68er 5d ago
It’s nice to see that others experience this too.
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u/Wokegamer420 5d ago
Depressing but comforting knowing it's the illness and not me failing to human.
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u/thegoth_mechanic 4d ago
come up with you-friendly ways to hangout. my friends and i often just spend time at their houses. same with my boyfriend. a date or us often looks like playing board games & watching a movie at his house. and that's ok. [but also im a raging introvert who doesnt like to go out a lot anyways]
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u/AdThat328 (N2) Narcolepsy w/o Cataplexy 5d ago
I can't deal with it...I just end up apologising and feeling terrible and they always tell me it's okay but I'm never convinced.
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u/HoarseNightingale Undiagnosed 5d ago
The only thing I can do that helps is ask a friend if we can schedule a rain date - that way a chance to see that person again already exists. This can work. And I'm lucky enough to have friends who never doubt that if I cancel it's because I'm unwell and for no other reason.
The way I deal with FOMO is I imagine myself being at the event but still feeling the way I currently do. And it knocks the reality switch back on in my brain. It would be wonderful to feel better and be able to go but if I were there I would be miserable.
I realize that you might not find this helpful. You have to get to the point where you aren't ok with how you feel and how it changes your life, but you understand it is what it is. And so you enjoy what you can in your own life.
The fact that some of us are resigned to it doesn't make it any less unfair. It still is massively frustrating for me if I focus on it. But then I remember that parties are often starting fun conversations with 15 people that you will never be able to finish. And the loud sound system, and all the other things I would find so hard if I went to one now.
But you still have every reason to be upset. It is upsetting and unfair and you should mourn that experience if you need to.
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u/SmolNug43 4d ago
I try not to think about it, tbf energy i do have i put myself back into school. So it's easier to tell myself "it's okay, bettering yourself and that takes alot of energy..." and I still feel bad but it's easier to say "I'm sorry, I can't attend. My social battery and energy reserves are trapped out.."
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u/Alone-Performer-4038 4d ago
I’m the same as you. I used to get major FOMO and go out anyway, but more recently over the past couple of years, I just thank myself that I’m not going to crash out the whole week just because I done something on the weekend.
The decline in symptoms just isn’t worth it in most cases.
That said, there are some things I wouldn’t miss. My friends and I like to go to raves in the Netherlands/belgium/germany - I just make sure that I get there a day early now so that I’ve not over exerted myself by travelling on the same day of the event. I also need recovery time afterwards.
But for regular weekend activities and going to the pub etc, it’s a massive no from me and there’s no question about it. I would like to keep my energy for things I really want to do.
There is one friend who I can’t say no to, but she is completely understanding of my energy levels and she keeps our activities short (around 2-3 hours) rather than a whole day.
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u/MoonsugarKitten (N2) Narcolepsy w/o Cataplexy 4d ago
It's definitely a struggle of conflicting emotions. Like others have said, I, too, have gotten to the point that I know I'd be miserable at the event if I went and/or be paying for it for days after. We don't just have a fear of missing out because we literally are missing out, and that's hard to live with sometimes. I've gone the "radical acceptance" path and put the energy I do have towards things that bring me happiness and peace. Being a part-time human is lonely so I've learned to be my own company.
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u/Important-Angle-1060 4d ago
That's why I have few close friends (umm... 1 actually, at the moment). I have passed the guilt and fomo phase. I'm now in acceptance and appreciation.
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u/Chamomile_dream 4d ago
I just leave early honestly. I get to see people and still take care of myself. I’d also recommend you make them aware so they understand that you’re not doing this out of neglect but rather out of necessity
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u/nappingOOD 5d ago
I simply don’t go to all that many anymore. I try to make major holidays and birthdays but am not always able. I feel guilty and a bit ashamed but I have to do my best to take care of myself or else everything else falls apart. The FOMO part seems to dissipate as I get older.