Here we are again

It’s been a few months since I’ve been here. I thought I was doing better but I feel hopeless once again. I just got into a fight with my only real friend about how I perceive my narcolepsy. Obviously I have a negative association with it, but he was encouraging me to accept it. I know the difference between acceptance and giving up, but I’ve never been able to accept this and don’t think I ever will. The disagreement led to him basically warning me that he might distance himself from me if I keep brushing off his advice. It feels like I push everyone away and I’m constantly given up on. My mind is taking me to really dark places and I just don’t want to do any of this anymore.


Your perception is based on your experience, that makes your perception the one that is most valid. Even these other people have some good answers, it makes no sense for them to tell you that your experience is not what you have experienced. It’s not unusual for people to think they can give advice about things that are outside their experience, for example single people trying to give parenting advice. They mean well, and perhaps they can’t even help themselves from saying something because they are so certain they have the answers. It’s usually really hard to change their minds too.

The challenge is to avoid resenting them when they are being pushy with their advice. It might help to really listen, and provide “active feedback,” to assure them that you understand what they are saying. Then you can say something like “I’ll think about it, but for now I need to deal with it my way.” You might also say something like “I appreciate that you care, and I’m working on it.”

Something that might be really helpful, is if you work with a therapist. Your family and friends are far less likely to disagree with what you learn from the therapist.

Actually, if the only way you can keep your friends and family from giving you bad advice is to push them away, maybe it’s not such a bad idea. A better way might be to establish a boundary that you are entitled to have, in which you are free to say, “I prefer not to have this discussion.”

You might also want to send them to this website, so they have a better idea of what you are dealing with:

Narcolepsy Fact Sheet | National Institute of Neurological Disorders and Stroke.


Hi @KatieRose
I am sorry you had such a rough fight with a friend. I think they are trying to help you but they are doing it in a very blunt and insensitive way that is not very helpful. I dont know how long have you been dealing with narcolepsy and what treatement have you tried but i dont think you should just accept something as long as there are valid options of treatement. But I think what you friend might have meant is to not let the fact that you have narcolepsy influence you so much. Yes it sucks but that does not mean everything is going to be terrible. Try to get the most out of life even tho it is difficult right now. :wink:

I think when your friend said they will distance themselves they meant it maybe as an empty threat to make you accept the narcolepsy or at least it seems like it because you two seem to be very close. I think they hate to see you in pain and they want to help you and they are failing and they just got frustrated. I think a good talk between you two when you both explain yourself could really help you both. :slightly_smiling_face:

I also wanted to ask if you have tried going to a therapist. They might help you with your struggles and give you ways how to find join in life even tho things are not ideal right now. I also wanted to say that it is good that you dont give up so easily. You have a lot of fight in you :slightly_smiling_face:. I hope you will be able to make things right with your friend and also that you will find an effective treatment for the narcolepsy. :wink:


Hi, as I can’t understand much about how narcolepsy feels, but I do know that your friend does prove a point. While accepting something is really hard to do, if one accepts that they have an issue, it can help with getting help for the future. Maybe you can’t completley fight it, but you can learn to work with it. Idk about distancing themselves to be a healthy way of encouragement, but acceptance could help as a good head start to finding a way to fix it if you don’t have the tools in front of you yet to work with.

What I think would genuinely really help you right now is therapy and a psychiatrist. Do you have either of these? I think medications would help you a ton. I know about one medication and it’s armodanifil, it’s fast releasing and works pretty strong from what I’ve heard. If you need anything right now I think you need medications. Acceptance isn’t always going to work for something that is physically dibilitating you. So don’t beat yourself up if you can’t fully accept it. After all it’s kinda like telling someone with a lost arm to accept that they lost it, and while it is possible to accept that, it hell as shit ain’t gonna be easy.

Please don’t feel discouraged, you will be able to work this out eventually,


From: twixremix

hi katie! thank you for being here and sharing your experience with this friend. i’d say they only mean the best but their words and intentions aren’t coming out correctly. you are in control of your own body, thoughts, and actions so anyone outside of yourself is only trying to do what they think is best. the ultimatum of the friendship though is heartbreaking and i’m sorry you have to go through that. you’re doing your absolute best in asking for support for your narcolepsy, knowing your own self so well. please continue to conquer these obstacles, always take yourself into account first as opposed to letting other’s thoughts take prominence, and hang in there. i’m proud of you and wish you all the best in this journey. love, twix


From: Lisalovesfeathers

Hiya KatieRose, I am sorry that you are feeling so hopeless right now, that is never a good feeling to have. I am slightly perturbed by the “fight” that you have just had with your only real friend about how “you” perceive anything, I don’t really understand how that is even an argu-ment that needs to happen? And the fact that it turns out to be something that is your health condition makes that statement even more real. Surely you are entitled you perceive your health condition in anyway you choose? In fact you can see anything how ever you choose, that is the wonderful thing about having opinions and personalities and it makes for great conversations. Now then, if your friend is indeed try-ing to help you and you just ignore everything he says, I can see that would be annoying but that is very different from having different opinions. If you want to open up to your best friend, the chances are they are going to want to offer ideas to try to help and you really have to try to be accepting of that even if it may not be exactly what you want to hear because that is what friends do. Your friend sounds like a nice person, maybe a little intense but their heart is in the right place and you are much to hard on yourself, please try to give yourself the grace that you would give to others because you deserve that Katie, you deserve to have a good friendship and that is a two way street. Much Love Lisa.



Hi @KatieRose I’m sorry are having boundary issues with your friend. Ultimatums don’t sit well with me and I think if it was me, I would probably distance myself from them or have a really good heart to heart with them. I have a chronic illness and in order for me to be at peace (as much as I can) with it, I have to accept it as it’s part of me. Your emotions about it are valid and you have to deal with it the way you know how to. There are treatments that could help you and I’m sure you already know that. ~Mystrose


From: crazytrain116

Thank you for sharing my friend. It is unfortunate that you suffer from the narcolepsy, but that does not define who you are. I can speak from my own personal experience with not letting my cancer experience i had and continue to deal with from last year define who I am. I do not think that your friend necessarily needed to give you an ultimatum, but maybe boundaries need to be set with him regarding your condition and you both approach it. There is a way to accept and allow those negative associative thoughts you may have about the narcolepsy to float through without having them running your life. Keep your head up and looking for treatment if you can as we all here love and care about you. If you ever need anything do not hesitate to reach out.


From: SuchBlue

hi katierose, welcome back to the forum!
I don’t think that the way that you perceive an illness that you have should destroy a friendship that should otherwise be good. While you should definitely acknowledge that you have the illness, that in no way means that you’re a worse person or weaker in any way. Just because you know and accept that you have it does not mean that you have to think negatively about it. You shouldn’t be judged based on just a weakness that you have, because at the end of the day none of us are perfect. It can be improved, but that is definitely not done by completely ignoring the fact that you have it in the first place. I hope things get better for you and you don’t feel worse because of who you are. :hrtlovefist: :hrtlegolove:


From: eloquentpetrichor

Welcome back, KatieRose! I can only imagine how difficult it is to live with narcolepsy and your friend knows more than me I’m sure but he still doesn’t know what it feels like to be you. You know you
I feel like your friend’s advice is coming from a place of love and care and maybe he is getting frustrated that he cannot help someone he cares about? But ultimately this is your life and I think you should tell him that you appreciate he wants to help you but that it is your life and your decision how you deal with it.

Maybe ask if you can just ignore your narcolepsy when you are together and have it not be a topic anymore. Don’t make your friendship be based on your narcolepsy or on his advice. Just be friends and talk about other things. If that’s what you want.

You are not a lesser person in any way because of this condition and I hope you can find the strength continue your friendship with this friend or let him go and find friends who will care about you even if you don’t take their advice :hrtlegolove: