Do I Forgive Myself For Having Narcolepsy? Fostering Self-Love With Chronic Illness
“Do I forgive myself for having narcolepsy?” I wondered recently.
What a terrible question to ask myself. I didn’t cause my narcolepsy… so why would I need to forgive myself? I aim to inspire others, yet I’m still battling my own demons. Am I a phony?
Five years ago, I found the words narcolepsy and cataplexy, a monumental step towards realizing that I was facing a “real” illness. My emotions have run the gamut – from denial and anger to pride and joy. I’ve grieved the loss of my “old self” yet found a new life path I love.
After five years, shouldn’t I be done healing?
Self-forgiveness is letting go of something from the past. Narcolepsy isn’t entirely in my past – it’s also in my present and future. Living with chronic illness, new experiences can contribute to feelings of inadequacy, guilt and sadness.
I wish I had a solution to this problem. Perhaps acknowledging that every day won’t be perfect is part of the healing. Or maybe it’s unreasonable to expect to be 100% “at peace” with narcolepsy after five years. Who knows.
Although I don’t have answers, I’ve learned some useful tactics to foster self-love:
1. Recognizing the ebb and flow: There are good times and bad. On bad days, it’s easy to forget that good days will return, but they do!
2. Ear-Muffs! Mute the negative self-talk. Wonderful people are really good at seeing the worst in themselves. Treat yourself like you’d treat others. When’s the last time you told a dear friend, “You’re a terrible person for skipping your workout”? Never – because it’s ridiculous! You deserve compassion and respect, and it must start within.
3. Positive mantras (to replace negative self-talk): I’ve picked up mine from yoga classes and books. Many are in my art journal. I also downloaded MyThoughts+ app and love it!
4. There’s no cycle to break: “I didn’t get everything done today; last week was a failure and next week will be too.” Stop! Today is new and doesn’t depend on yesterday. Let’s be reasonable about how many hours there are in a day, make a plan and go for it. Ever onward!
5. Difficulty is difficult, but not pointless: In our society, “challenges” are viewed as bad things, something we’d rather hide from, naturally – because they hurt. For me, I try to view my challenges as reminders to appreciate my healthier times. This mind-set change has been incredibly helpful. More on this here.
6. You are not alone: newly diagnosed with narcolepsy, and other chronic illnesses, you may feel that your community doesn’t “get it”. The disconnect is disheartening. With time, you will meet people amazed by your strength and determination. I continue to feel like angels are dropping down from heaven disguised as my friends.
These tactics won’t make difficulty dissappear, they just help me get by. In writing this post, I’ve decided I’m not a phony, I’m human. I hunt for positivity as my way of coping. And today, I’m celebrating the strength and comradery that comes from being honest and sharing my challenges. Thank you!
“There’s no cycle to break!” Brilliant! Thanks for that–I needed to hear that.
Love #5. I had an epiphany a few years ago–after spending lots of time feeling sorry for myself and wondering when I would get my act together so that things would finally start going the way I wanted them to and I wouldn’t have all these pesky difficulties getting in the way, I realized that I had everything backwards. Challenges in my path didn’t mean I was doing something wrong–they just /were/–just part of life. But they were also giving me a chance to grow stronger and be a better person. The fact that I kept facing new challenges was, in part, because I’d successfully overcome the old challenges, and that meant I was doing something very right! When I was able to start giving up on the idea that my life should, would or even could be “perfect”, that was when I was able to free myself to make the most of all the opportunities for growth in my life, even the opportunities that I did not want.
Thanks, Julie, for another great post!
Thank you for reading, Laura! These are good self-reminders for me too. Have a great day, Julie
I’m still working on acceptance…. I thought that by the time I got my Narcolepsy diagnosis that I would have accepted all the stuff going wrong with me, and move to working on doing something about it.
But, I didn’t have the feeling of relief (almost joy) that I had when I failed my first sleep study. Perhaps because things didn’t end there….
Not to mention the whole ordeal with having to require all my doctors to be comfortable with the diagnosis. And, then having to find a different doctor that would be comfortable with treating it.
Wonder if I’ll ever be back to they way things were before….
Thank you for your comment, Lawrence. I’m sorry to hear that the diagnosis process has been so challenging. Hang in there! Thank you for your continued support of my efforts. Cheers, Julie
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Love reading your blogs, you are such an inspiration!
Thank you, Kathy! I look forward to seeing you at the NN conference in October. Cheers, Julie
Julie, just started reading your blog and I’m so grateful for this and all the other wonderful people who are going through the same things I am!
The other day I told someone I didn’t feel comfortable driving because I fall asleep at the wheel and then they laughed and said “Narcolepsy isn’t that bad.” For some reason that made me cry, which before when I hadn’t been diagnosed people often joked I had Narcolepsy and I would laugh right along with them. Now that I know it’s something I can’t help, it felt like they were laughing at my health and ultimately making me feel lesser-than. But, your 6th point has been one I’ve come to love; knowing I’m not alone even if no one close to me or my family understands, is very encouraging.
Hopefully years from now I can look back and see everything being diagnosed with Narcolepsy has helped me with; finding myself, finding out I have a passion for learning and listening, and realizing it’s okay to tell people I don’t like to drive without feeling incompetent. So thank you:)
I understand completely. Communicating with friends and family about narcolepsy can be challenging. I recommend reading: “The Pause and Nod,” “The F word” and “I’m a person with Narcolepsy and I’m Proud” found here: https://julieflygare.com/start/. Download and share my narcolepsy quick fact sheet with others. You are not alone. You’re overcoming adversity and I’m cheering for you! Thank you for following my blog.
Sending wakefulness and smiles from DC,
Julie (aka the REM Runner)
I love your blog! I have recently started a group on facebook so we can update our daily struggles and let everyone know they are not alone. We have such a hidden disability and face so many judgments. So many of us suffer depression and feel alone and the group has been really helpful for a lot of people! I think you would make a great addition to the group 😉
Thank you, Jenean. I would be thrilled to join your Facebook group. Thanks for thinking of me and reaching out. Cheers, Julie
Julie, your blog is a wonderful resource! I discovered it today and have cried my way through a good portion of your posts.
I was diagnosed with narcolepsy with cataplexy about a week ago. I have just started medication and am struggling to come to terms with it all. I am 41, a mother of 3 and believe I’ve been coping with this illness for more than 20 years (though I think my case is relatively mild compared with other stories I’ve read). For most of that time, I was treated with antidepressants because all the doctors I visited could only equate the symptom of “being tired all the time” with depression. I am fortunate to have finally been referred to a sleep specialist, who diagnosed me following an overnight and MSLT sleep study.
I was wondering if Jenean would be willing to share her Facebook group info. I would love to connect with others who share the same struggles, especially as a newly-diagnosed PWN!
Thank you so much for your kind comment. I’m so sorry to hear that you’ve recently been diagnosed with narcolepsy. It’s a lot to adjust to, especially as a mom of 3 who has lived with undiagnosed narcolepsy for so long. I truly cannot imagine, but I am certain you are a strong person who has overcome a lot of adversity to get to this point.
I have a feeling you will find strength and understanding in our PWN community. It’s not a cure, but it helps to know you are not alone. I’m so glad you’ve found my blog helpful as part of your journey! Please feel free to contact me if I can help point you towards additional resources.
Sending smiles and wakefulness your way, Julie
Having and explanation to my continuous fatigue and just weird sleep/no sleep I found comfort in that for some reason…it must be the years of misdiagnosis and the attitude of never giving up ……When I got the diagnosis on 11/12 I felt like my questions finally are answered! I also have gone back over my history and feel this has been with me since my teens….I was 43 when I finally got it and not because of any of my doctors ever thinking of giving me a sleep study!! So I self refereed..my first study showed Narcolepsy but I had not been off of my medications for “CFS” and my Fibromyalgia….so once I got my new insurance from going back to work I have to change doctors….good thing too! He gave me a few different sleep studies including the wakefulness one, and the standard overnight nap one again but this time I had been off of all my medications and well he said I have never seen these results like yours…So for me having started severe symptoms in 1997 and events prior that would have been a signal to someone who knew what Narcolepsy is. I appreciate everything you are doing and well I have lived over sixteen years in agony…unfortunately I do have Fibromyalgia and that being a trash can diagnosis in the medical field is no wonder it took so long for my diagnosis! I can honestly confess my belief in the power of positive thinking!! I have even used bible verses: Phil 4:13 I can do all things through Christ who strengthens me. Even so I am having a super hard time …trying to hold it together..I was on SSDI and was finally working to get back to my career as a Medical Coder …..six months into my first long term temp job I was diagnosed with Narcolepsy….I was subsequently hired by the company I was doing the work for…I have been working full-time for them for almost a year now! I totally believe in the power of positive thinking but I find myself over doing it or unable to care for my daily activities so I just put all my energy into working…I feel like I am in a circle and I have a hard time comprehension that I am not in some sort of viscous cycle…I start to feel good I over do it by thinking I can actually do the things I want…but it’s not that easy…I know I am new to all this reality of Narcolepsy and maybe someday I will forgive myself and all of the many many medical providers I have seen through out my life….I hope I can come to that place someday
This is perfect timing, as I spent a good part of my therapy session today discussing my difficulty accepting my limitations. Negative self talk is a major demon. Thank you for sharing your tips – I will definitely employ some right now!
Wow. Being diagnosed with narcolepsy 5 years ago totally changed my life too. For the better. My diagnosis came as such a relief to me. It was good news for me. After 13 years of constantly feeling so sleepy all the time that I often felt too tired to be bothered doing things & so often I didn’t. Over time my family & friends became more sick of my lack of energy & enthusiasm to do things so my relationships suffered. The doctors I frequently complained to about my sleepiness & lethargy kept telling me maybe I had a virus or a touch of chronic fatigue or was simply depressed, which at times I was also often told by doctors that there was nothing wrong with me. After hearing that enough times I finally started to believe what other people in my life did, in that I had become a lazy, reliant, going nowhere worthless person…. So when I heard the words “you have narcolepsy” it bought tears of happiness to my eyes. What I had & what I’d be going through for years was real. To know that it hadn’t been all in my head & that I wasn’t just a lazy, slacker who was so messed up that I couldn’t even pull myself out of it & get on with life. Knowing that there was a medical reason for it all changed my whole perception of myself & I no longer felt like the worthless, lazy person that id started to believe I was.
Not to mention, when my family & friends found out that there was a medical problem that was causing me to come across as the laziest person they knew. Meant my relationships with them all improved.
Plus being diagnosed meant that I no longer had to suffer through the symptoms as they could begin to be treated & managed.
My Sleep Medicine doctor started me on Ritalin & I’ve never looked back. They help. I’ll never be cured, at least not by current medical science, but with medication & a few changes in lifestyle my diagnosis gave me my life back, both physically & mentally.
Sure, it’s never good to have an illness, especially one like narcolepsy that can’t be cured & like anyone else I would never choose to be sick. Id rather know I had an illness than have it & not know about it.
I hope you’re able to see the positives a bit better now & that you too are better now that you can be helped by medication.
Narcolepsy is not fun & it’ll continue to effect my life & maybe even stop me from doing some things. It’s not pleasant, but at the same time there’s far, far worse illnesses out there that cause people an lot more suffering than anything I go through. Narcolepsy is not deadly, it’s not going to shorten my life, it doesn’t cause the body constant physical pain or other awful things like that. So who am I to complain really when there are countless other people out there who have illnesses that are so much worse & so much more serious.
That is how I’ve dealt with my narcolepsy diagnosis.
Will we ever for the full 100%? Just like will we ever accept it for the full 100%?
Questions I struggle with too. Doing fine most days. Helping others where I can.
Still there are those moments where it goes wrong. When doing too much for example. When you just don’t want to give in to your N.
What should I have done to prevent myself from this? Etc. etc.
Bad moments we all surely have and need to pass by asap.
Luckily I can say I wouldn’t be where I am now in life without my N (and C)
That always gets me passed any negative thoughts.
We need to shout this from the mountain tops! I find so many other people with narcolepsy to be hard on themselves. To have a negative self-talk that doesn’t serve them. I think fostering this self love is so needed!
Thank you for being a guiding light Julie 🙂