Unsupportive Friends and Family Members
We ALL have them. So what do we do about them?
My advice is two-fold:
1. You can invite your narcolepsy non-supporter to a sleep doctor’s appointment, local support group, or Narcolepsy Network Conference. You can also suggest my videos or my book (shameless plug 😉 )! Ultimately, you may not be able to get through to some individuals. This is very unfortunate, but leads me to my second piece of advice.
2. Be patient, you will find supportive people to add to your life.
With time, I’ve met people who see my narcolepsy as something “cool” and courageous about me. I could never have predicted who would think this – but surprisingly, respecting narcolepsy comes so easily to some people. They just “get it” and it’s not always clear why. I cherish these friendships and wonder why I was banging my head against the wall trying to get others to understand for so long.
Some of my original non-supporters are still in my life by circumstance or because they bring me happiness and support in other areas. My narcolepsy non-supporters don’t bug me nearly as much anymore because I’ve lowered my expectations on this topic and hold tight to those friends who “get it” so effortlessly.
This advice comes from my personal experience. I’d love to hear others’ strategies for coping with this challenge.
I think not receiving support from the people closest to you is very unfortunate, and unfortunately very real.
Great advice on how people can cope with this. I really think the lack of support from loved ones is something that a lot of people have trouble dealing with.
Thank you, Alex, for being one of my greatest supporters. I’m so glad you like this post.
It seems that non-support often stems from people not understanding. When I mention I have narcolepsy and explain, “It means I am excessively tired during the day and have a hard time staying awake” a lot of people respond in some variation of: “Yeah me too! It’s seems I’m always tired! Oh well, that’s what coffee’s for!” or I get people who respond with remedies like, “Oh, well I bet you don’t have a regular sleep schedule. You know if you’d just go to bed at the same time every night you’d feel fine.”
So I stopped telling people I have “narcolepsy”. It’s like most people don’t have a point of reference for “Narcolepsy” so they just don’t understand. But if it comes up and I say something like, “I have a disorder. My brain is always trying to put my body to sleep during the day. So I constantly feel like I am about to fall asleep…all day long.”
I have had much better luck with this. People seem to understand “Broken Brain” better than “Narcolepsy”. Then if the person asks for details I’ll get into it and that’s when I can introduce the term “Narcolepsy”. Once I have their calm attention, I can usually bring understanding and they follow with support. Otherwise, they seem to make a quick judgement that I’m just ‘tired’ like everybody else.
Great point, Jill! This seems like an awesome way to help people understand. Thanks for sharing your strategy!
Thanks Jill! I’m getting so tired of the same old comments as well! I am definitely going to try your latest technique in the near future.
Hi Cindy, Thanks for your comment. I agree, great suggestions from Jill!
I can very much relate to your reasoning behind NOT telling people you have narcolepsy. Suddenly, *everybody* has narcolepsy! Which is silly, of course. It’s more rare than that. Until I was diagnosed, I pretty much thought my sleep issues were due to being a busy working mom. Who isn’t tired, right?
I, too, have taken to calling my condition/s my “sleep thing” (like Julie’s “knee thing” and “head thing,” LOL) and being more descriptive about the condition so that people ask questions and realize that there’s a huge difference between falling asleep because you’re sleep deprived and having a sleep attack.
Wow Julie, you’ve read my mind.
I really try not to let it bother me but it can feel hurtful when friends utter those words ‘yeah I know exactly how you feel, I love my sleep too’!!
I try to convince myself that there’s no thought involved in their response and that what they say is to just make conversation.
I think this has been the most difficult part to deal with.
Luckily I have some amazing and supportive friends who have taken the time to listen and they accept that my daily limitations differ from theirs. These friends are the ones my energy goes on.
Great suggestions above.
Thanks for reading my blog and commenting, Deb! It’s good to know that we are not alone in this struggle. Here’s to celebrating our supportive friends! Big smiles, Julie
Julie, I agree with Jill. My 18 year old has Narcolepsy and people make these same comments to me like I am not “teaching” my daughter the proper sleep techniques. I am also an R.N. so my approach now is “my daughter had a neurological disorder affecting the hypothalamus called Narcolepsy.” That gets people’s attention and very little negative silly comments. Most people are either shocked into silence or very interested and wanting to know more. My daughter is now using that approach as well. As far as unsupportive family and friends, they have been left in the dust. Her true friends (old and new) and a few family members that have supported our daughter have forged closer and more meaningful bonds with her than ever before. Mindy
Thank you for your comment, Mindy! This is a great approach – thank you so much for sharing. I’m so glad to hear that your daughter has forged closer more meaningful bonds with supportive friends.
I discuss ideas for successfully communicating narcolepsy in: Pause and Nod, The F-Word, and in my YouTube narcolepsy video series.
In this post, I hoped to comfort PWNs when sometimes, despite one’s best efforts, a friend or family member refuses to listen or acknowledge one’s condition. I would’ve liked to know when I was first diagnosed that I deserved support and would find wildly supportive friends with time. Big smiles, Julie
Thanks for this post, Julie. I wish I had seen it almost 3 years ago when I came home from a consult with my doctor, having learned that I had very mild narcolepsy and UARS.
I remember vividly driving to that appointment, then taking a nap in the parking lot until I had to go to the appointment, as I had nearly fallen asleep on the 45-minute drive there!
At any rate, within two weeks I discovered very quickly that people will quickly mock or gloss over what they don’t understand, even those who you would expect compassion from (in particular, I remember a personal trainer friend of mine saying, “Well, at least it’s not cancer!” while shrugging cheerfully).
Why is cancer or a “visible” problem worthy of compassion but an “invisible” condition like narcolepsy (or, for my friend, MS) not as deserving?
My Dx led to me making a huge life change in my career field (I was a freelance editor; now I am, at age 48, studying to become a sleep technologist!). To me this resonates as a blessing in disguise but the problem of ignorance to sleep disorders continues to challenge my patience.
Unfortunately even the good people in our lives need continuing education, especially about matters of the brain.
The fortunate news is that neuroscience is catching fire. While I’m not thrilled with the current focus on brain-training (I think of it as a marketing gimmick more than a useful therapy), I am thrilled that people are starting to consider the brain a thing to care for, like the heart or the skin.
Eventually I hope we’ll be able to break down the walls that enclose the mysteries of the brain in a way that people will finally stop judging these “invisible” conditions as matters of mental will and not the truly devastating physiological processes they really are.
Julie, I’m loving your book so far. I can *so* relate to the challenges of dealing with the nuisance and downright dangers of irresistible sleep!
Tamara Sellman, student and blogger
Hi Tamara, Thank you so much for joining in the discussion on narcolepsy awareness! You are an inspiration. I’m hopeful that narcolepsy will gain the respect it deserves. We are just getting started. Thank you for checking out my book. I hope you enjoy it! With gratitude, Julie
All of my family are non-supporters; mostly, I believe it is because I have been labeled as “lazy” for so long (since about 8 years old, over thirty years). Added to the fact they they feel that they have “real” medical conditions – ones that cause pain. Since we currently live together, I cannot relegate them to the background, but I can now drown out their collective voice/labels. This is thanks to your book, website and others in the N community that let me see that I AM NOT LAZY( and that my will-power played no part) and I have reasons for my extreme need for sleep…. I now feel legitimized.
How do I deal with frustration/anger at the medical community for mis-diagnosing my narcolepsy for over 30 years? Since age 13, I realized something was wrong with me. I didn’t have the energy of other kids my age, and always felt drained. Since my parents were going thru a messy divorce at the time, my lack of energy was attributed to depression. For 32 years mentioned my extreme tiredness. Most of the doctors suggested I get 8 hours of sleep every night and exercise more. Yeah, right, when I hardly have the energy to get out of bed and do the very basics of life. Other doctors would check my thyroid and iron levels, and look at me like it was all in my head,when the results came back in the normal range. Now at age 45, I finally have the diagnosis, thanks to a DO, who took me seriously, and ordered the right testing. Inhave scientific proof on paper in a format that the medical community rsspects. But now my life is half over, and I feel like I’ve never really lived, just sleep-walked thru life. I’m thankful for the diagnosis and the overall good health that I do have, but still hold frustration and anger regarding the doctors who blew me off, and the decades of living in a fog.
I too thought of calling that doctor who – when I handed a peice of paper detailing all my symptoms (sleep paralysis, sleep hallucinations auditory and visual, always no energy and tired, sleeping all the time) he skimmed it over without reading it and said “oh yeah classic depression.” I was so angry that day. If he had read it maybe it could have clicked to him. I wasn’t having catelpexy at the time. The cateplexy is what got me diagnosed because by that time I suspected I had it. I didn’t even realize I had most of the symptoms 5 years ago. I too feel like I’ve wasted a lot of my life. I’m hitting 35 next year and everyone else in my family is so successful and here I am living with relatives.
My family doesn’t understand either. I JUST got on medicine that seems to help give me energy yesterday. I went from couldn’t get out of bed to packing half of my room. I thought I did a real great job that day and was proud of what (little) I accomplished because it was a lot more than I had been able to do before.
My brother today said – I’ve been cleaning all day you’ve been sleeping all week and packed for two hours yesterday. He doesn’t understand. I asked him to read about it – he says he’s too busy – no offense. I feel like leaving town and just being alone honestly.