When My Rheumatologist Went Beyond My Physical Pain
For the first time ever yesterday, I broke down and cried at my rheumatology appointment. My rheumatologist usually runs about an hour behind schedule, because she takes so much time and care with each patient she sees. She is the best doctor I’ve ever had, and as an undiagnosed patient with a unique set of pain and discomfort, I’m lucky to be on her patient roster after a slew of unhelpful specialists passing me off to the next.
I’d been counting the days until I got to see her. I’ve been dealing with a bad pain flare-up. Breathing troubles, muscle aches, a chronic itch, and a host of other misfitting symptoms have rendered me pretty much out of capacity. And yet, I’ve still been going to work every day, socializing with friends, participating in family gatherings, and trying my best to appear normal to the people around me. But I don’t feel normal.
I feel incredibly strong waves of pain that come over me at once, and I can’t find a comfortable position. I feel achy, itchy, weak and like my head is being poked by a million little sharp needles in one tiny spot. But I smile and joke and force myself to get through the day because I love my job, my friends, my family, and my wife.
It’s no surprise I’m having a flare-up now. I’ve mourned four deaths in two months. My beloved grandfather, a wonderful close friend, and two childhood acquaintances. It’s been a hard eight weeks, and I feel the losses like a ton of bricks. I feel the anxiety of lives cut short, three out of the four deaths I’m mourning under 30 years old. I wonder if I’ll be next. I always wonder that, because with pain like this, something has to be wrong.
And yet, when I walked into my doctor’s office and sit in the waiting room, I was reminded that most of the other people sitting here have diagnoses. They have a name to put to their pain. A treatment plan. Hope. I have a body that feels like it’s 80, looks like it’s 14, and has no relief in sight, because at 26 years old, I’m losing hope.
The receptionist called my name and I went into the familiar office, where I’ve sat countless times, rattling off my symptoms and pains, old and new. My doctor listened this time, taking in every word I said. She looked at me carefully and the first thing she said was, “I know you’re not feeling well, and we’ll get to that soon. But first I want to tell you that you seem really sad, and I want to know how you’re doing other than what hurts.”
I was startled because I’m used to doctors launching into speeches about how if all my test are negative and normal, that I can’t be sick and should go home, drink more water, and get more sleep. Dismissive, and unhelpful. But that wasn’t what I was hearing.
So I let myself cry, like a tidal wave, and my doctor just passed me the tissues, and told me that we were going to figure it out together.
I couldn’t find the words to say to her in person, but I’ve never felt more supported.
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