Drifting Diagnosis-less

“To heal is to touch with love that which we previously touched with fear.”

~ Stephen Levine

We, as humans, like things that have names. We do not like the indescribable. Things that have names have a nice little box that fits in its nice little slot in the universe. With undiagnosed chronic illness, I am free floating in space with no niche for me to cozy into. Living a life without a diagnosis is living a life untethered. 

The thing about our medical system is that they won’t treat what they can not name. No matter the debilitating symptoms that hold you back from living your life, without a name, you are adrift, alone in the fight. 

The needle has become a familiar friend as doctors run test after test until there aren’t any more and they circle back to the basics. I find myself hoping that my numbers will leap out of the normal range, alerting my doctors that no, this is not in my head. As my blood sugar crashes and my heart rate spikes I demand through a haze of pain,  No. There is something wrong. You just don’t know what. 

Shaded pencil drawing of a hand reaching out towards a frayed rope symbolizing when you are past the end of your rope and you are reaching for something to tether you.

“Living a life without a diagnosis is living a life untethered.”

There is no test to measure the shards of glass beneath my feet that everyone else seems to dodge, no test to determine the level of fatigue in my muscles that tire so much faster than they once did, no test to quantify the debilitating exhaustion that binds me to my bed. I know how I feel. But no doctor, no matter how qualified or compassionate, can feel what I feel. 

And so I drift. I find myself suspended in an in-between space. The space between the sick and the actively recovering. I wait for a wave of relief when someone finally gives me a name. That name holds so much power. I wait for the relief because with that name, there is a plan. A plan of how to move forward, how to anchor myself back down to the land of the truly living. 

But while a diagnosis will show me the path to physical wellness, I have spent enough time in the in-between space to know that I can begin to reclaim my power without a name. There are other avenues of wellness. I can listen to my body, and not push farther than it allows. And while I may not be able to heal my body, I can heal my brain. I can take care of my mental health, and send my body love. Through mindfulness, I can get rid of the thoughts that do not serve me, and learn to find joy. This, in itself, is healing. 

“This, in itself, is healing.”

Photograph of a silhouetted girl jumping for joy in the Pacific Ocean with the sun setting behind her.

Sure, I don’t have a diagnosis, and maybe that means I don’t get the medical attention I need just yet, but I am still growing. I may be adrift, but I am collecting pieces of driftwood, and soon I may just have a raft.

The Power of Vulnerability: This is Me

First Post

We are a combination of what we define ourselves as and what the world sees us as. In our world today, young people tend to put a lot more value on crafting a persona the world will fall in love with instead of prioritizing self-worth and acceptance.

However, both sides of my claim hold equal importance. How we define ourselves holds just as much weight as how we present ourselves to the world. 

A photograph of the author looking out a window as a metaphor for being stuck behind the glass of who we really are.

“How we define ourselves holds just as much weight as how we present ourselves to the world.”

For me, the world always saw me as the person I aspired to be. I was driven, hard-working, talented, athletic, quick-witted. I was the “perfect” student, the “perfect” friend, the “perfect” daughter. I was a role model. 

But being “perfect” is not sustainable. Something has to give. For me, it was my health: a “mild” concussion I never healed from, and an ever-growing list of chronic illness symptoms. 

And yet I fought to maintain the persona I worked so hard to create. I kept pushing my mind and body harder, faster, farther, and eventually, it couldn’t sustain itself anymore. While the world may still have seen me as the overachiever and perfectionist, I defined myself by injury, pain, fear, and loss. 

A pencil drawing of a girl with a split face between how she portrays herself to the world and the sickness she feels on the inside.

“While the world may still have seen me as the overachiever and perfectionist, I defined myself by injury, pain, fear, and loss.”

Over time, I came to see that the way I defined myself was not fact, and the way the world saw me wasn’t entirely true either. I am not defined by the pain I endure or the loss I grieve. They are a valid part of my experience, but I choose to define myself by the gifts they have given me: the grit, the perseverance, the strength. 

These characteristics were hidden from the world when I chose to hide my story. The more I go through, the more I feel ready to share my experience. I am ready to show the world the full picture of who I am.

At times, it may make me feel weak to share the more vulnerable parts of myself, but that is just the human in me. We are all scared of being accepted when we show who we truly are. I hope that by sharing my vulnerability, I will encourage others to share their most open, honest selves, and show that we all have a voice to be heard. 

I am still driven, hard-working, talented, athletic, and quick-witted. But I am also so much more.

I get back up no matter how many times the world knocks me down.

I am a warrior.

I am learning.

I am strong.

I am chronically courageous.