I am 16 years old. I sit in a cold ER with my mom on a September day. My mom and I are regulars at all the local ERs because, for the past year, I’ve been struggling with a deep, nagging hip pain. It has made my walking stiff, slow, tense and incredibly painful. I am as uncomfortable sitting or standing for long periods of time, as I am in moments in which I am moving, or the moments when I am “at rest.”
Today, we are here because my hip pain has now spread to my back. Although I went to school today I was physically unable to sit in my seat without extreme discomfort. Standing throughout my classes was not allowed, and I couldn’t do my work that way anyway. As we wait in the ER for a nurse to call us back, I’m hunched over in a chair. My lower back aches, feeling like pulls and stretches while my hip still burns, as it has every day for more than a year now.
As you might imagine, I saw many doctors and nurses from age 15-16. But it seemed as if they never have seen me when I needed them most — when my hip pain flared. Even my regular doctors did not see me on my worst days. I was extremely fearful they thought I was pretending to be in pain. I was afraid they thought I was seeking drugs, even though I turned down every addictive painkiller. I was afraid we would never know what was causing my pain, and now that the pain was in my back, my fears were worse.
When the nurse finally called mother and me back to check my vitals and do a basic intake, I began to feel hopeful, that my back pain would give the doctor some insight as to how to help me. I didn’t understand how someone like me, who was always presenting with a chronic illness, could not find a doctor who knew how to treat pain that I had heard was not uncommon for people with my diagnosis. This doctor, like all, entered the room bright-eyed and ready to help. He ordered an x-ray and an MRI.
But, just as they had for a year-and-a-half, they both tests came back clean, even though the burning pain in my hip was now spreading through my body. The bright-eyed doctor’s eyes turned gray as he shook his head and focused on his chart. He, too, was at a loss about how to help me. He didn’t know what was causing my pain, so he couldn’t possibly have hope at stopping it, only treating it. He ran down the list of possible painkillers almost as fast as all of the reasons I wouldn’t be leaving with them today.
With apologetic and sad smiles, we are both on our way.
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