What Brings You in Today?

What brings you in today? 

Those are often the first words a medical assistant asks once you enter the exam room, but man, for someone living with a chronic illness it can be really difficult to answer.

For me, the feelings surrounding a chronic illness medical appointment can start days or even weeks before the scheduled time.For me, the feelings surrounding a chronic illness medical appointment can start days or even weeks before the scheduled time. I start thinking about my symptoms, how to explain them, which ones to focus on at this particular appointment, what relief I’m hoping for. Hoping for. There it is. The hope that this appointment will be the one that brings answers, relief, or at least a path forward.

But, for every glimmer of hope I feel, there is a ton of anxiety too. Will I once again be told my labs are normal and the doctor has no answers? Will the doctor acknowledge that there is something wrong, but have no answers to help? Will I be referred to another specialist for more testing?

I plan for the appointment. I go through my medical binder and tag the pages I may need to refer to. I make a list of symptoms to discuss. I try to figure out how to compile months of symptoms into a coherent, yet brief, synopsis. I worry that the pieces I’ve decided can be left out just might be the important pieces that finally complete this puzzle. 

I arrive at the appointment holding my trusty binder like a shield against any more disappointment. I wonder if I’m taking too long telling the medical assistant what brought me in today. I mean, I know I’m just going to restate it all to the doctor so how much detail should I go into at this point? I worry about being a demanding patient. I know I need to advocate for myself, but I also desperately need the people in this room to be on my side. Where is the line between asking the questions I need answered and asking too much?

I can feel my heart rate increase a bit when the doctor walks in. I’m not afraid of doctors, I’m afraid of disappointment. My anxiety increases as I try to answer the doctor’s questions. I do my best to explain what I feel, but there’s no reference book to tell me how to describe my actual symptoms. “What does it feel like?” is one of the dreaded questions that will inevitably be asked. Is it aching? Burning? Pressure? Stabbing? How do I explain a sensation I've never had to put into words before?

And then there’s the pain scale. What’s your pain on a scale of 1 to 10? How do I answer that? What does a 1 feel like? What does a 10 feel like? And after living with pain for so long, has my idea of a 6 become completely different from someone else's?

The discussion is over. The physical examination is complete. There is a moment of quiet reflection from the doctor while my anxiety builds.

Will today be the start of a new path that leads to relief? Or will today be another disappointment, sending me back home with the same pain and even more questions?

From the practice…

From our perspective at Radiant Rheumatology, we understand that an approaching appointment can bring a mix of hope, anxiety, and even frustration. You may have waited a long time for answers while also worrying about how you’ll explain everything you’ve been experiencing or whether you’ll remember everything once you’re in the room. You don’t need to arrive with your symptoms perfectly organized or know which ones are the most important to mention. That’s part of the conversation we’re here to have with you. Sometimes something that seems unrelated may help us see a larger picture, and sometimes it takes questions, time, and listening to understand what your body has been trying to tell you. You don’t have to tell your story perfectly. Just start where you can.

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities. Click to submit: https://www.radiantrheumatology.com/patient-perspective