From the summer of 2005 — and for the next 13 years— I battled a disease with no name. It hung from my shoulders and tugged at my limbs. Its heaviness wrapped around me, weighing me down with unfathomable force.
“Your testing looks good. You need to exercise,” doctors would say.
“I’m struggling to walk,” I’d plead. “To stand. At times, I can barely sit upright, let alone exercise.” But my words were unheard or misunderstood. I was weak, but I couldn’t relay just how devoid of energy I truly was. And so, this disease that lived voraciously within me remained anonymous.
I told my story in every word combination possible, hoping I’d finally capture the attention of a doctor who cared. But each time, I was left in the darkness, so alone. My words were incapable of saving me. I learned that when symptoms are invisible, words may not be enough. When a neurologist finally ordered a lumbar puncture in 2017, I was diagnosed with multiple sclerosis (MS). But the diagnosis came only after 13 years of begging health care providers to listen.
Once I had an answer, navigating my health care options became easier. But it was still challenging to convert my symptoms into words in a way others could understand, and that was the hardest part of adjusting to life with a chronic disease. Even with others surrounding me — my mother, father, husband and now my children — I feel alone when no one can comprehend how I feel physically.
“I just can’t stand today. My legs are shaky. My strength is gone,” I’d tell my husband.
“I’m sorry you’re dealing with this,” he’d reply. But he couldn’t really grasp the intensity of being so weak my body was depleted. The weight I carried was invisible. And that wasn’t his fault. My words simply fell short.
Then, in 2018, I saw a Facebook post from the National MS Society that shared a collection of photos from a photographer with MS. The photographer, Andrezza Haddaway, had paired 10 photos with words describing the symptoms she’d experienced: tingling, dizziness, fatigue, mood changes, optic neuritis, numbness, MS hug (a squeezing sensation around the chest or torso), blurry vision, brain fog and weakness. I clicked through the photos, rapt. When I came to the final photo, I saw my body with MS for the time. As if I was looking into a mirror that translated how I felt to an image, this photo depicting weakness was pristinely how I’d envisioned my lack of strength — angry, stubborn and mighty. It was everything I’d tried to express to doctors for 13 years. This photo made me feel seen for the first time since this disease erupted in my nervous system all those years ago.
I saw my body with MS for the first time. … It was everything I’d tried to express to doctors for 13 years. This photo made me feel seen for the first time since this disease erupted in my nervous system all those years ago.
Beneath the photo was a blurb describing how weakness had impacted Haddaway. I felt her words deeply, as if they were my own, but to those who have never experienced MS firsthand, these words — alone — would likely slip away without impact. But with the photo beside them, they told a story — one I know quite well.
“I’m just so weak.” I’d said it so many times to doctors, my husband and my family. But it never translated with magnitude. The word weakness was flat, lacking any depth. But here before me stood an image with everything my words had missed. A woman was being pulled from the shoreline by the tide. The ocean wrapped its arms around her, pulling her vigorously until she had no choice but to succumb to its force. Her body was swept away by the boundless mass of water. That is my weakness. This one photo says it all. Now, I thought, I can show my husband what my words were trying to say for years.
I saved the photo, and I return to it when I’m in need of validation. When I’m angry that doctors dismissed me for so long, this photo gives my journey meaning because it acts as evidence that my words spoke truth. I look at it to remind myself that I’m not alone — that others do in fact feel the same heaviness I describe. I return to this photo to remember how far I’ve come on medication because days like the ones shown in this photo are few and far between now. I show it when I want to explain to someone how I feel, now knowing my words alone aren’t enough. This photo brings my invisible disease to life and I’m so grateful to have an image to help tell my story.
As a writer, I use words to relay my thoughts. To tell stories. To connect with others. Words have always been my art, but sometimes they fall short. As I sat on an exam table time after time, year upon year, from one specialty to the next, I never found enough words to describe how this disease depleted me. When I saw the photo, I realized that sometimes pictures are needed to complete a story. They fill in the gaps left between words and within sentences. They present the shades and reveal the layers that words often fail to project.