The Book of Rare Diseasesfrom the Vermont Synergy Initiative

Step 2

The visit

Your main concern may get only a few minutes. This is how to make them count. It is also why the first appointment and a later visit to your primary care doctor are two moments of the same conversation. One is to prepare. The other is to decide.

Lead with your one page. Ask for the single test or referral that would change what happens next. Write down the plan before you leave.

Who you'll meet, and how to work with each. Everyone here is on your side. The trick is knowing what each one is there to do.

  • The triage nurse is the first gate. They decide how urgently you are seen, and where. Help them help you: lead with the warning signs, plainly and briefly.
  • Your primary care doctor is the one who knows you over time: your history, your family, the life you actually live. They have a long-term stake in how you do. That is what lets them, more than anyone, see all of you and connect the pieces. Make them your point person. Give them your one page, and post it to the portal before the visit, so it is waiting for them.
  • The specialists are each responsible for one part, and usually right about it. They meet you around a single problem. No one of them is handed the whole picture. Joining the parts back together is the work you and your primary care doctor do. It is not a failing of theirs.

Do you deserve the very best? Yes. It's the only acceptable answer.

Their job is to get you well. Yours is to help them do it: politely, tactfully, and prepared. Bring your one page. Ask the one question that matters most. Write down the plan before you leave. A clinician handed a clear history and a specific question can do far more with the same appointment. Most will be glad of it.

Nothing here is a diagnosis. If anything is urgent, call your doctor or emergency services now. That means chest pain, trouble breathing, a stopped or sharply reduced flow of urine, or fever with back pain.