Community and Connection in Chronic Illness

Happy Tuesday, friends! I’m trying to get into a Tuesday/Thursday/Saturday publishing cycle, instead of posting at random times throughout the week. This is the second post in that effort.


Do you have your people? The ones who help you reset and keep things in perspective? Over the weekend I went to my first narcolepsy support group meeting since moving to CT and it gave me a renewed sense of hope and community.  There were folks at the meeting who were diagnosed just this month, after decades of confusion and questioning. I remember 10 months ago when that was me and for the first time in years I felt like I had a future.

Support groups can be lifesavers for many following their diagnosis day.  My diagnosis day was a day of celebration but the elation was soon followed by anger, grief, and a sense of loss.  Not to mention complete overwhelm as my doctor gave me information about possible therapies which led to a dark research spiral into the bowels of the internet.  I had so many questions about, really, EVERYTHING, and I was lucky to be able to meet other people with narcolepsy face-to-face within two months of my diagnosis to dig into all of the things that I wanted to know.  That first support group meeting was filled with compassion, hugs, and so many tears.  The people who sat around the table were fighting the same fight and we finished each others sentences.  I felt safe and I felt SEEN.  I felt worthy, and I knew that these people believed me.

No matter where you are on your journey – diagnosed, undiagnosed, chronic or acute illness – this is your weekly reminder that you are worthy and deserving of connection.  The diagnosis journeys that so many of us are on can take a serious toll on our sense of self worth and on our sense of belonging. The medical profession has a lot of work to do when it comes to listening to patients’ stories and trusting what we know about our own bodies.  It feels HORRIBLE when the doctor reads your test results and exclaims that “you are perfectly healthy, there’s nowhere else to go from here.”

Regardless of how your most recent doctor visit went, you are fabulous, you are worthy, you are deserving. And I believe you.

I know that not everybody has the opportunity to meet with a support group face-to-face.  Good thing there are alternatives!  I love this article about social media as therapy, written by my friend Elle on her website www.falling-asleep.com. Below are links to a few other websites that have resources for those with narcolepsy and other chronic illness.

Visit the Resources page for more ideas. Note that you might see diminishing returns to your investment in support communities. This is a thoughtful article on the possible downsides of support groups.


These recommendations are not meant to substitute for care from a licensed physician and/or therapist and for medication.

My Word of the Year

Last Year

2017 was a year of adventure and abundant creativity, but also one of intense anger, confusion, and betrayal.  My New Year’s Resolution was to reduce food waste and hell if that didn’t fade out of view by the second grocery shopping trip of January.

And then narcolepsy. I tried to fight against my labels but spiraled into denial when I compared myself, my accomplishments, and my potential to that of a fictitious non-narcoleptic version of myself.  Spoiler alert: she has better time management skills, organizational skills, more wakefulness, and OH YEAH! She doesn’t exist.  I felt betrayed by the medical profession and the three neurologists who gave me a full workup and declared that I was perfectly healthy.  I’ve fantasized about dropping burning piles of poo on the doorsteps of many doctors; not just those three neurologists, but also the know-it-all general practitioners, allergists, cardiologists, psychiatrists, psychologists, etc. who didn’t have the guts to say “Something’s wrong, but I don’t know the answer.”  Apparently I still have some anger to work through.

The Diagnosis threw me into an identity crisis and I think that crisis ironically came from me realizing that I knew more about myself than I thought I did.  I was finally able to look at my narrative about myself and see clearly the passages that others had added.  I wasn’t lazy or unmotivated or stupid.  I was clinically sleepy beyond reason which is what my body had been telling me and what I had been telling the doctors.  Over the years I let them convince me that I was wrong, and now, with The Diagnosis in hand, I had control.  For the first time in my life I let my creativity take the reigns and I launched an accessories brand – sleep&sparkle – that challenged me in ways that I hadn’t been challenged before, but also used many of my strengths and fed a passion for sartorial expression which I kept deep inside of me as soon as I graduated from high school.  Somehow, The Diagnosis put me in touch with the deepest parts of myself and empowered me to believe that I deserved to be happy and to create a life doing something that I loved.  My husband and grandma had been telling me this for years, but until The Diagnosis, their words might as well have been in a foreign language.

This Year

In 2018 I’m ditching the resolutions and opting for a WORD.  A word that will be the lens through which I filter my thoughts and actions.  A word that will push me outside of my comfort zone while also pushing me in the direction I want to go.  My word for 2018 is EMBRACE.  I fought it for weeks in December until I finally caved and realized that my resistance was a serious indicator of how much I needed this word.  I was hoping for something bigger that set off fireworks and felt exceptional like BRAVE or FIERCE or PRESENT or INQUISITIVE, but I kept coming back to my frustration with my sleepiness, my inability to accept good things that were happening to me and because of me, and my fear that I would always be angry and bitter about The FUCKING Diagnosis.

“Why am I so mean to myself? Why can’t I accept who I am, what I am, how I am?  Why can’t I EMBRACE this beautiful thing called life that I’m working so hard to make but can’t seem to appreciate?”  Hence, EMBRACE.

The work of this year is to EMBRACE all of these things and so much more.  It is to EMBRACE my weaknesses and failures but even more importantly my strengths and successes.  It is to EMBRACE my anger and bitterness while also EMBRACING my creativity, my enthusiasm, and that I am more than my story and my circumstances.  It is to EMBRACE the opportunities and the relationships that make my heart happy.  It is to EMBRACE me, the way that my grandma and husband did years ago.

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Bonne année, my friends!


What are your resolutions, words, ideas, as you enter 2018?  Or do you opt for nothing at all?

On Hallucinations

“A hallucination is a fact not an error; what is erroneous is a judgment based upon it.”

-Bertrand Russell

#tbt to #Cologne in May. I was rounding out my first month on Xyrem and experiencing (relatively) dreamless, restorative sleep for the first time in my life. The hallucinations only started disappearing more recently. Before diagnosis I would go about my day with strange notions of what to expect and weird interactions with people that I couldn’t explain. My dissertation advisor would ask me if I’d gotten the email she sent me and I would be completely confused – um, of course I got your email and I responded to it yesterday morning. I had the tactile, visual, full sensory experience of typing out the email on my phone except that it never actually happened.

People with narcolepsy can experience hypnagogic (falling asleep) and hypnopompic (waking up) hallucinations that scientists think are related to semiconscious REM sleep. My hallucinations are rarely violent or frightening (as outlined in many descriptions of narcolepsy) but they are always disruptive and disorienting.

I recently found this quote from BR and it hit me in the gut because it so perfectly captures why I was in a constant state of confusion pre-diagnosis.

Half Birthday

SLEEP&SPARKLE is my life right now. I’m trying to build my brand and grow my company into something fabulous. I’ve cut down on writing over here because I worry that posts about work will be perceived as all self-promotion-y. Where do these voices come from? Who says that? It finally occurred to me (I can be dense sometimes) that if someone hates that I’m writing about building my business they can unfollow me! #revelation

So let’s get on with it!

SLEEP&SPARKLE turned 6 months old yesterday! YESSS! I launched the website on June 5. Life is so good right now. I can’t believe that I’m a person with narcolepsy AND I’m doing something I love. While I didn’t have a diagnosis until this year, I’ve fought sleepiness (and related symptoms) ever since I can remember. I battled to keep them from dictating my life but they did, and until I started Xyrem, I couldn’t envision a future where I would be able to make a living doing something that I love, something that is so stimulating, so creative, so engaging, and so all encompassing. Maybe “make a living” is way too generous a phrase at this point in my company’s life. But I see a path forward for the first time ever. And to be honest, I can see a LOT of paths forward! Whether sleep&sparkle is a success or falls flat, I know that I’m going to be okay.

Happy half birthday to me and SLEEP&SPARKLE!