What I Wished I Would Have Told the Urgent Care Doctor About My Rare Disease

The story of Amber

I only asked you to test my urine. That’s it.

Was it positive for a UTI or negative? I didn’t ask you to diagnose me or offer me advice. As I explained upfront, I have issues with my bladder that makes it hard for me to tell whether I have a UTI or not. If I have an infection, it’s important for me to get antibiotics before it becomes a kidney infection. If it were a weekday, I would have headed to my urologist. But it was a Saturday.

So when you walked back into the exam room flipping through the questionnaire I had filled out in the waiting room, I only expected you to tell me my urine dip was positive or negative. Instead you said, “Do you think your husband is cheating on you?” I was so dumbfounded my jaw just dropped. My mind raced–what in the world made you think that? Then it made sense. I take Valtrex. The herpes drug.

I take several prescription medications and Valtrex is one of them. Yep, I have herpes. Except it’s not what you think. I have Vestibular Neuritis. It’s not that common. Maybe you haven’t heard of it? I listed it under medical conditions, right next to my current medication list. If you are not familiar with it, please allow me to explain. Vestibular Neuritis means I have the herpes virus in my inner ear. Most people will get it at some point in their life. You may have had it at some point when you were sick and felt dizzy. 95% of the population has it once in their lifetime with no recurrence. But lucky me, I’m part of that other 5%. There a few factual things I would like you to know about me:

*As a result of having Vestibular Neuritis I have dizzy spells that can last from seconds to hours to days to months. Imagine months and months of being dizzy all day, every day. My longest episode lasted 7 months. I wasn’t sure if I could continue with life at that point.
*I have hearing loss in my right ear from this viral infection. I can only pray that the hearing loss won’t become worse.
*I will take an antiviral, Valtrex currently, for the rest of my life.
*Genital herpes is NOT a cause of Vestibular Neuritis.

My husband and I have been together for over 10 years. He is the most wonderful, supportive, and faithful man. My husband has no sexually transmitted diseases nor do I. And, my husband has never cheated on me. I was so embarrassed, so humiliated by your question, I didn’t know what to say. I wish I would have just gotten up and left. Instead, I stood there, shaking, and had to specifically ask if my test result was positive or negative, although I already knew the answer. If it had come back positive, your question would never have been asked in the first place. You would have given me a prescription for antibiotics and I would have been on my way. But I guess in your mind a negative urine test + unexplained bladder issues + on Valtrex = an untreated sexually transmitted disease? That seems like a big leap.

I know you had a waiting room full of other patients but please, please, next time take a minute to talk to your patients. A patient should never feel ashamed when going to a doctor, regardless of his or her medical history. And please never assume to know what is wrong with them based on, a not so thorough questionnaire, they fill out in the waiting room. People say never judge a book by its cover. Perhaps you should never judge a patient by her paperwork. This entire situation could have been avoided if you had asked me one simple question, “Why do you take Valtrex?”