get well soon does not apply

By Rebekah Friend

A life beyond Hashimoto’s Disease

Something is wrong. I don’t know when I first felt the niggling doubt, the tugging on my subconscious. I do know it was ignored, shoved into a place where unanswered thoughts go to be forgotten. I was too busy to listen. Too busy until the worry became loud, and even then, it was an apologetic squeak that came out as I told my doctor, “I don’t feel right.”

I fumbled through family health history, adding the words thyroid disease--the precise moment my second-guessing earned a voice. “Oh, really though you’re too young for that,” my doctor pronounced, and I could feel her internal eye roll. “Ok, but can you check anyway?” I was shocked to hear the timbre of my own voice ask. 

That pebble became an avalanche of doctor visits, medication changes, hours spent reading articles trying to understand what is my life now? I’ve always been a dancer--would this sudden difficulty exercising mean that part of my life was over? What else might change? I was given a diagnosis, a prescription, and a dismissal, all in the same breath. Business as usual, no words for the human being facing a foreign future full of questions and sparse answers. The ringing in my ears echoed no cure, no cure, no cure. 

I guess it was equal parts fear and hope that pushed me to search for a doctor who might care whether her patient improved. On my sixth try, I met the first one who showed compassion. “You’re not crazy,” she asserted. Brimming with ideas and energy, she sent me back to the lab, eager to obtain fresh data points. 

I had learned to say, “This is my good arm,” but today, it was not enough. I was more comfortable in the dark where I could not feel the digging in my veins, the painful search for what would turn into numbers, a digital foretelling of my future. What would they say this time? Maybe it was this fear added to the needle’s prick that sent me into the blackout. I always tried to be brave, calm, like nothing was wrong, but it didn’t always work. The blood they take means something. It can never be routine, no matter how many times I showed up to this clinic. 

I know it’s scary when the phlebotomist sees my slumped body, but I still wished she’d leave me for a moment of peace, wouldn’t have called my name so loudly, or fanned my face so immediately. “I’m ok,” I wanted to tell her. Or at least I’m ok when I don’t have to think about what’s happening. Unconsciousness is a momentary bliss, one I know is fleeting and not life-threatening. I felt the heat flood in first, then came the high-pitched ringing, and finally, the blackness faded into light, and frantic hands came into view. 

Back in my body, things are more serious. I feel things that are hard to put into words, which leads to raised eyebrows when I try to tell what this existence is like. “I feel like I can’t breathe” earns a stern reminder that my lungs are functional. I know that, but I don’t know how to make what I am experiencing something others understand. 

Six hundred and fifty. The results are in. Depending on the scale, that’s six hundred and forty-one more antibodies than I need. If I were healthy. Six hundred and forty-one reminders that somewhere, somehow, the memo read “Kill it with fire!” instead of “We’re all alright.” It is comforting and depressing at the same time to read that number. I know I’m not all alright, and this number knows it, too. This number is my ally somehow, but that does not stop it from being big, frightening, formidable. 

I sway to notes of pain, exhaustion, confusion, a constant sense that something is wrong, yet gaslighting is a loud drum that works to drown out the nuanced cues and throw me out offbeat. It’s hard and constant work to separate the sounds. “Too young,” “You look fine,” “It only matters if you become pregnant,” “I will only help you if you twist my arm,” play on repeat, deafening and dissonant. When I can’t hear the rhythm my immune system is striking out, I miss the answering steps I should be treading in the complex choreography between my body and me. 

Those are the notes I am learning to train my ear to. My doctor’s questions encourage me to listen hard. It is like being back in my first ballet class, hearing my teacher count the phrases in steady sets of eight. On ungraceful legs, I try to follow. Rest, nutrition, environment, stress reduction--the current movements I have been practicing. Right now, I feel about as graceful moving through these steps as my seven-year-old self was at grand jetés. Step, step, leap! I used to count. Rest, rest, activity. I work on pacing myself, knowing the consequence will be days lying in bed if I get the pattern wrong. 

And I do get it wrong more often than not. Frustration sets in quickly, self-pity yelling out. Tell me it isn’t over, the way I waltzed through dance class with enough energy and no worries about bowing out; the way I gleefully accepted offers of chocolate cake and hadn’t yet developed a food “no” list. I don’t want to face the future with fears of “Will I ever?” 

I let pity run wild at times. It’s easy to do, especially on days when I am asked, “How are you feeling?” “What’s going on with that?” and I am tempted to retort, “I’m feeling ill. Chronically. Every day I am not feeling good.” But even on days when simply existing is hard and I can’t explain what’s happening, when I can’t get out of bed and wonder if crying or numbing will feel better, even then, I want to hope for what my life can be.

I am not merely the sum of my diagnosis or my lab results or my medications, or my list of don’ts or my limitations. I am still a whole human being, who loves to dance, who can dare to dream in the face of illness and fear, whose worth is not determined by her activity level. 

To be honest, I don’t know if I knew that before. I don’t know if I ever would have learned it had I not gotten sick. If I could choose to make it all go away, I think I still would. I miss eating cake! But while I’m here, I am learning the value of many things, such as friends who like to sit on the couch, using my energy with intention, having boundaries, saying yes to only the most essential things, and recognizing when I need a break. Most importantly, I am not Superwoman. I am a human woman, and that is valuable. 

Rebekah friend

Although chronic illness sometimes has her convinced she’s in her nineties, Rebekah Friend is a 31-year-old who savors all things creative, from cooking dinner to dancing ballet. She enjoys connecting with others’ shared experiences of life through writing.