A Rose by Any Other Name
It’s not like I just woke up sick.
I grew sick.
I grew up, down, and out sick.
Who knows when it really started? I used to placate myself like a child in early puberty: “It’s fine, everything is fine, this is totally normal.”
If my life had a narrator, here they would speak in a deadpan, “Everything was not totally normal.”
The first time I went to get help, they started to throw out acronyms. To me, they sounded like tiny bullets; shrapnel slicing at my ears and shoulders. “BP, BPD, PD,” and bigger words like “anxiety” and “depression.”
As I got older, the list of words and potential diagnosis expanded. They were fluid, ever changing depending on who I talked to, and so I began to think of them as subjective. If no one could really quantify the sickness, if the sickness could not be defined, did it truly exist? Wasn’t it something more ephemeral, something ethereal, something transcendent?
And so, my sickness became spirit. It became soul. While some believed in God, I believed in myself – in my feelings, in my pain.
I became obsessed with the idea of diagnosing it.
I’ve always loved the idea of words. Each person feels so separate – has their own world – but for a moment, when we read another’s story, we are them. As a child, I used to ask my mom why the world was not at peace.
She would stroke my hair and smile, “Because they don’t understand each other.”
So then, it would be my mission to find the perfect sentence. The perfect series and order of words said in exactly the right way that would be impossible to misunderstand or misconstrue would certainly solve the question of world peace.
Apparently, I carried this idea into adulthood, as if finding the name of my disease would bring me peace.
I grew, and so did my problems, and so did my sickness. Long nights were spent as if in a dream, feeling as though I could see the world around me, but I could not physically or mentally be a part of it. I began to visualize the world as a giant fishbowl with me as a lonely astronaut, tethered but floating above it.
As the sickness grew, it stretched from my brain into my spine. Hot licks of fire across my back were given new names like “chronic muscle spasms,” relentless headaches were termed “traumatic brain injury,” my joints detaching from my body became “temporomandibular joint dislocation,” my lungs turning into pointed knives and stabbing me from the inside was “pleurisy.” Bullet after bullet, wound after wound.
When I became pregnant, the pain was unending. Here, the problem was simply called, “Me.” A grenade.
Through it all though, there were never, never any answers. I went back to the source: to the brain.
Here, the doctors looked at me with exasperation. It was like I could hear their thoughts by looking at their faces. “Surely, surely, she should have given up by now? It’s been years. 10 years. Sometimes, things just suck.”
I would have stopped in a heartbeat if it were only sometimes, but the times between the suck and the not suck were rapidly decreasing. A determined self-advocate, I left with new names: “PTSD, OCD,” and always, “anxiety.”
Over and over again, I lost faith in the prospect of naming my sickness. I began to question if I was even sick to begin with. Over and over again, they reinforced that it was all in my head. Over and over again, I floated – the lonely astronaut.
I began to feel sorry for my doctors. What must it be like to have a patient who never heals? A patient you cannot treat? I walked in and out of each appointment like a shade; a demon better exorcized and banished than poked and prodded – who knows what monster lies inside?
It wasn’t until I stood in my bathroom, holding clumps of my mid-back length hair dropped clean from my scalp in my hands, that they began to listen. “A balding woman?! My, my, my, now this is serious.”
The body doctors were equally baffled and frustrated, referring me out for “fibromyalgia,” which is a term for unexplainable, all-over body pain. For the first time, this felt like something. I hoped to hope that I would feel relieved, but instead I only cried. Research led me to new names like “chronic,” “incurable,” “existence widely debated among the medical community.” I had thought like a writer, that the name would be the final touch on my chapter; like a child, that the name would bring peace. I should have thought like a human: a name is the beginning of a new life, but I spent so many years floating above the Earth that I think I forgot how.
They stole my blood, poked and prodded my belly, examined my fingertips for discoloration, and weighed me like a farm animal. The newest doctor, the best of the best doctors according to the last doctor who had been the best of the best, began to use words like “MS,” like “Sjrögens,” like “lupus,” like “autoimmune disease.” And, when the results came back, they gave me one last name. The longest of all the names: “Undifferentiated Connective Tissue Disease (UCTD).” All those words, so many letters, one complete sentence, to say, “We don’t know, but you’re not crazy.” If I wasn’t before, I am now. All those years of searching, of trying, of floating, of flying, and feeling that I must be absolutely dying… they were, and are, the worst symptom of the sickness.
With a name pressed tightly to my lips, I searched and searched and searched. Every name has a meaning, a history, a culture. Who am I today? Who have I become? I am… “wait for this to get worse to receive an official diagnosis,” I am “incurable, undefinable, meeting criteria that stretches across multiple disorders,” I am “take this medicine and see if it helps, and if it helps then that’s probably what you have,” I am “just come back in six months and we’ll talk more then,” I am “you really do need to start taking that medicine.” I am the guinea pig, I am the astronaut, I am the rose by any other name.
But I think that I was born with one?
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About the Author
Sara Watkins (she/her) is an editor, author, UCTD-haver, and the founder of Spoonie Press, which is devoted to publishing work by chronically ill, disabled, and neurodivergent creators. She collects tiny fat dragons in her [not so] ample free time. Contact Sara at www.sarawatkins.net or @saranadebooks on Twitter and Instagram.