Deserving to Rest: How an Invisible Disability Restored My Relationship with Rest

“Rest is not idleness, and to lie sometimes on the grass under trees on a summer's day, listening to the murmur of the water, or watching the clouds float across the sky, is by no means a waste of time.” -John Lubbock, The Use of Life

I grew up in the heart of the Midwest, where everything was hard-earned, including rest.

From an early age, I observed and learned that rest came after a hard day’s work. It was earned through productivity and (subjective) usefulness. Now, as a music therapist with 10 years under my belt, it’s easy for me to look back at this cultural mindset and pinpoint the origins of my proclivities toward people-pleasing and perfectionism. I found respite only after I’d proven my worth. I, perhaps like many of you reading this, mistakenly learned that rest was not something I deserved; it was something I earned.

It wasn’t until much later in life, after a few years of both practicing therapy and participating in it myself, that I started to question this story I’d created about needing to earn rest. But the real catalyst arrived when I was diagnosed with complex chronic health conditions that led to brain surgery at the age of 27. I quickly and unexpectedly found myself in a position with two distinct problems:

• 1.     I couldn’t work the way I used to be able to.

• 2.    I needed a lot of rest. And I mean a lot.

How could I reconcile my body’s need for deep rest with my mind’s need to prove my worth through productivity and perceived usefulness?

I couldn’t.

Enter: Denial.

At the time of my initial diagnoses (Chiari Malformation and Ehlers Danlos Syndrome), I was working full-time for the California Department of Corrections (CDCR) as a Music Therapist in a state prison in Vacaville, CA. I loved that job. It checked all my boxes for both productivity and usefulness with the bonus of feeling like I was making a difference in people’s lives. I worked long, hard days and went home to enjoy my “well-deserved” rest.

But as I became sicker, I began resisting my body’s need for rest. Unsurprisingly, I got even sicker. I worked in the prison for months beyond my doctors’ recommendations, until finally a sweet-natured therapist asked me a question that would change my trajectory: “What would happen if you took a break from working to focus on your health? Have you considered disability leave?”

The words pierced my heart and shattered my Midwestern mind. Who does she think she is? First of all, I am NOT disabled. Disability leave is reserved for people with visible disabilities. Right?

I was immediately confused and confronted with what would become a major reality in my life: the invisible disability.

According to the Invisible Disabilities Association, an invisible disability is defined as “a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities.” In short, invisible disabilities are disabilities that are not readily apparent to others. (But trust me on this: they are not “invisible” to those of us who live with them.)

Unfortunately, my experience with Chiari – a neurological condition in which brain tissue extends into the spinal canal and can cause complex and varied symptoms – included severe headaches and a debilitating sense of vertigo and imbalance. Outside of my work in the prison I had started using a cane to help me get around. I lovingly referred to the purple mobility device as “Alice,” because at the time I felt a lot like Alice in Wonderland. I was literally and figuratively dizzied by what I had become: a young adult with an invisible disability.

Despite the increasing neurological symptoms from Chiari, I remained incapable of asking for help. I wasn’t willing to be (or yet capable of being) vulnerable enough to let my coworkers, bosses, and patients see how much I was suffering. I refused to use the cane in the prison as I feared that would send shock waves through the institution, likely resulting in forced disability leave. I didn’t know who I would be without my career. I think in some ways I had decided it was easier to destroy my body than to take the time I needed to rest and begin healing.

One day, as I was walking down the prison’s mainline to my office, I experienced a severe shooting pain in my head, became very dizzy, and lost my balance. Luckily, I was with a trusted coworker who helped get me safely to my office, where I told her about my health diagnoses and the likelihood that I would need brain surgery to stop Chiari’s progression. Even in that moment, I remember feeling as though I would never be perceived the same again. I was terrified that I would never get back to my old levels of productivity and “usefulness,” and therefore I would never be “deserving” of the rest I so desperately needed.

Despite this ongoing inner conflict, after a lot of tears and long discussions with close friends and family, I finally decided to initiate the paperwork to request disability leave. I scheduled brain surgery. I started wondering who I would be without my work. I remember thinking: Is it even possible for me to rest, knowing that I can’t be productive in the ways that I’m used to?

On September 15th, 2014, I tearfully placed my old, CDCR-issued guitar into a locked case in the prison with a handwritten sign my office partner had made that stated “Don’t move. This guitar belongs to Ms. Ellis.” In a journal entry from that day, I wrote how I felt I was “in a dark part of the journey,” but I “[did] not intend to set up camp [there].”

Rest did not come easily those first few days. My then fiancé (now husband) would often find me around our small, one-bedroom apartment searching for ways to be productive so that I wouldn’t feel guilty for being on disability leave, but even those small acts would make me feel sicker. Finally, and with much commitment and support from others, I started to tell myself a different story: I did not have to earn rest. I was deserving of rest, simply because I existed.

To anyone reading this and thinking “easier said than done,” I want to be totally transparent with you. It is easier said than done. This shift didn’t come easily, and it wasn’t simple to apply in practice. But the act of telling myself that I deserved rest despite my ability to perform or produce was hugely instrumental in gradually shifting my mindset. Often, the stories we’ve created about our own lives (e.g. “Rest is earned, not deserved”) develop over decades. That’s why it's not uncommon for it to take some time to rewrite those stories, but it can be done.

After years of practicing this mindset shift, I can now say that I truly believe it. I believe I deserve to rest. I believe that rest is resistance. I believe that rest is productive. I recognize that we live in a society where rest is typically earned, and I embrace that this mindset shift is counterculture. It has been a very big part of my ability to navigate life with an invisible disability. It didn’t magically cure my chronic medical conditions (and I am not saying it will cure yours either), but it has made it easier for me to manage them. I can now say with total honesty that I feel a lot better.

When I chose rest at a pivotal point in my life, I chose myself. It wasn’t the easy choice, but it was the right one. Now, years later, I own a small business and am honored to help support other people who are on different parts of various healing journeys. One of my favorite things to do is to help people reclaim their inherent worthiness to rest.

No matter who you are, or which cards you have been dealt in your life, you deserve to rest. You deserve to get the help and accommodations you need. You deserve to take time to heal. Your productivity has nothing to do with your self-worth. As the brilliant researcher and writer Brené Brown says in her book The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are : “If we want to live a Wholehearted life, we have to become intentional about cultivating sleep and play, and about letting go of exhaustion as a status symbol and productivity as self-worth.”

If you want to reclaim rest and self-worth in your life or if you need support identifying and re-writing some of the stories that aren’t serving you anymore, let’s work together. Visit www.feelcreativewellness.com to learn more or click here to book a free initial 20-minute consultation to see if we’d be a good fit for therapy or coaching.