A bit lost and not knowing how to feel nor what to do next

Been to the doctor and my diagnoses has been updated to narcolepsy w/cataplexy. My family can’t accept it, it made my boyfriend have like a mini break down and is not allowed in the house. My kids have seen me have attacks and I don’t know how to get over the guilt and shame…

Sophia, dear, why guilt and shame? You didn't cause this or ask for it to happen. If your family will seek family counseling, it might help them process. No one should be directing ill feeling at you. You are not at fault.

(Longish answer, but your situation touches me.) I'm so sorry that others are adding to your pain. Likely at this point you've had so many misdiagnoses, which has added to everyone's confusion. There aren't very many people with diagnosed narcolepsy (in my little town I must be the only one since I can't get my medication without it being pre-ordered) and, sadly, ignorance of what is happening to you is the "norm." Please let every positive person around you and on this support site be a "vote" in your favor: you did not cause narcolepsy and currently nothing can make it go away. Counseling for you would help as your emotional strength grows. (Most towns/cities have community counseling available for those who cannot afford it.) When I found out I had narcolepsy six months ago, to my surprise I blurted out "finally, I have a condition that isn't my fault." Where did all that blame/shame come from? Studies show that when confronted with a new situation, our brains's default position is negativity. With the help of my counselor, I'm re-training my brain to be accepting when confronted with new and scary information. So far it's working. I can't change others, but I sure can change myself. We all are rooting for you - that you can find a peaceful balance in your very difficult position.

Thank you for comforting words and positivity, it means a lot to know people care

Education can make a world of difference, at least id did with my family. Nel shared a link in another discussion, but I'll include it here. It's an awesome, comprehensive set of educational videos about Narcolepsy and may be very help for you, your boyfriend, and your kids (depending on their age, you may just summarize for them).


So sorry you are having a hard time. I also have narcolepsy with cataplexy; I've had it for 30 years, but only got the diagnosis in 2006. WE (and I'm including everyone with this diagnosis) did NOTHING to cause this. Nor did someone with cancer, or diabetes, or a congenital deformity, or...whatever. The diagnosis did not change you into a new person, just like it did not change me. The diagnosis is an opportunity to start over, with a new set of expectations and understanding of what is happening and hopefully some treatments and coping mechanisms to help you deal with each day. You are not perfect now, nor were you before, and neither is anyone else on this planet. Save the guilt and shame for those things that you CHOOSE to DO that have a negative impact -- having ANY illness or disease does not qualify! You have the strength to deal with this; frankly, you have been dealing with this for a long time already! If you find the tools to deal with the symptoms you can work on having more "better" days; your family needs to find a way to deal with their own issues and support you and your children as they would any other illness. While I have compassion for all of you, and understand that most folks are unfamiliar with narcolepsy, their role should be to SUPPORT you, not cause you more stress! Good luck to you...and please know that the folks on this forum empathize and are here for you!

Hi again. Having worked through my righteous indignation and read your profile, the Nice Person in me is now being represented. :)

I understand that your family believes that disease is a personal failure of some type; even some very progressive individuals who believe that we create our own destiny can end up blaming folks for being ill. I recently was in a narc support group that included family members (without narcolepsy), and after having a round table of our symptoms and some general discussion, one of the well-meaning members asked if we had "found god". Her belief seems to be similar to what you alluded to in your profile -- that God will "heal" us if we are "sick". The Grand Question...which we all assume we know the answer to...is, what is "sick" versus "healed"? I see illness as an opportunity to grow into a more well-rounded person. Instead of always being on the go, doing things that may or may not be of real value to me, I am more selective of how I spend my time because I have less of it to waste. I create more healthy boundaries with people so those who are not helpful are not in my life as much. I have compassion for others who face challenges, have gratitude for the good in my life, and consciously acknowledge that even on my worst days I am doing better than some folks' best (and vice versa).

It's up to you what you choose to learn from this experience. There will always be loving, helpful people who will be there to help and there will always be hurtful folks who would mistreat you...it's up to you to find balance and focus on what -- and who -- is important to you. YOU have that choice.

Also, recognize that your difficulties are also teaching your children! They are learning tolerance, how to handle unexpected situations, how to help others, and appreciation for their own healthy bodies. Sometimes we need to let others better themselves by helping us...

As I posited to the family member, who are we to we determine what is "healed" and what is "sick"? What was missing from your life that you are now being forced to find a way to provide?

For many years I wasted time on things that really had no value for me and was of no benefit to anyone. For me, that was more "sickness" than the narcolepsy; this limitation has in a way awakened me (gotta love the irony!) to my own mortality; I am engaging in more meaningful uses of my energy, nurturing relationships that are honest, non-judgmental and supportive, and letting the rest fall away.

I understand that it can be difficult, but perhaps there is a positive side to our illness that requires some digging to find...

Hi Sophia, I can understand your feelings and what prompted me to look and join a group like this.

when my son startled me awake from falling asleep on the couch a few months ago, I looked like was having a seizure and he started screaming and crying. I had been intending on telling the kids more of what they could see like this (because I couldnt hide it anymore) and not to be scared. But a good cataplexy episode happened before I got to explain to my son and daughter the extent of what was happening. they had gotten used to me falling asleep more than the average person.

My family knows what I have, but they dont speak of it. They just seem to think its just being tired all the time and nothing more. That is also frustrating for me. Keep being strong, I am a single mom myself and just being a mom makes you strong. There is nothing wrong with you and you have nothing to be ashamed of. Finding other people with this and friends to speak with and focus on building a good foundation with your kids. Find the things you can laugh about with your kids together as theygrow and you will grow together. Even if nothing seems very funny, its reaching inside yourself to help put them at ease and in turn they will see that you are the same great mom but stronger than a lot of other moms because you have more on your plate to deal with and defend. Anyway.... my thoughts. I am new to all this too.

Thank you for all the love and support I have been going through so much trying to desk with everything, I’m not cleared to work or drive now, ssi is giving me a time, my son is only one but you can see how scared and panic he is when I have an attack, my daughter is worried I’m going to die and she’s worried who’s is gong to take care of her and her brother, I don’t know what to say it took so much not to cry and break down and try to comfort her, I’m only 24 and it seems I’m battling everything on my own, I’m realizing I need to slow down and worry about the kids and myself, and get better but it seems like all of those that are suppose to be friends and family and be there in my time of need have deserted me

Hey darlin, you should never feel and guilt or shame. I personally don’t have narcolepsy but my love does. Hes the father of my child and love of my life. He was diagnosed back in july. He also has the cataplexy attacks. Baddddd. Its hard at times to see him like that. The girls have seen him fall multiple times. But its not his fault and isn’t yours either. This is life long and even though its hard now i promise it will get easier. Never better, but easier for you and loved ones too. Sometimes you have to see the funny side of things. Nick went to go get blood work done. And was teasing the nurses telling them to “watch out” he will fall on them. And he did. Its not always like that but you get the gist. Just stay positive dear.

Then you very much, the people that are suppose to be there for me have disappear, they can’t deal with it. On top of that I have anxiety and PTSD, its like I’m the plauge of the family

Hi Sophia,

Sadly your story seems to be similar to many, many people living with an invisible illness. I have narcolepsy 30 years this year and misdiagnosed after misdiagnosed for 11 years left me feeling as though I was a burden to society. Because of my misdiagnosed I didn't have any support and lived through my teens and early 20's alone and terrified. Diagnosed was such a relief, but didn't make family life any easier as I and my family were uneducated about narcolepsy. That was before we had google, now we are accessible to all kinds of narcolepsy education. Sadly sometimes this still isn't enough. I became a narcolepsy advocate many years ago. It took me a longtime to shake the guilt I felt. I embrace that guilt now and I am so proud of myself for what I have achieved living my life with narcolepsy.

A friend with narcolepsy and I put this slideshow together a few years ago to help educate the unbelievers. We kept it close to 7mins as I find if people switch off its much longer.http://youtu.be/bGbD51Er-gI

Since making that I found this one made by an Australian lady


I hope these videos are of some help to you and that you find the strength from the positive support you will get here. happy New year to you and may 2015 be a great year for you xxx