Medical Appointments: Plan Ahead
One of the most important places to advocate for yourself is at your doctor’s office.
Document Your Medical History
Appointments can feel short, so it helps to arrive organized and prepared to ask questions, says Joy Selak, PhD, the coauthor ofYou Don’t Look Sick! Living Well With Invisible Chronic Illness, which she wrote alongside her rheumatologist. The book chronicles Dr. Selak’s decades-long journey with two invisible illnesses.
Selak brings a one-page document to her medical appointments, listing her diagnoses, current prescriptions, history of surgeries and medical interventions, and a notes section with questions or topics she wants to cover that day.
“Everything you can do to not take up appointments with data collection, but get right to what the concerns are, can lead to a more meaningful conversation,” she says.
Document which medications you’ve tried, and why they didn’t work, says Arthur Mandelin, MD, PhD, a Chicago-based rheumatologist and an associate professor at the Northwestern University Feinberg School of Medicine. “Without this information, insurance delays in getting access to the next or newest drug can be very lengthy,” Dr. Mandelin says.
Track Your Symptoms Between Appointments
Get specific when tracking your symptoms between appointments, says Alireza Meysami, MD, the head of rheumatology at Henry Ford Health in Detroit, where he specializes in diagnosing and treating inflammatory arthritis, including psoriatic arthritis.
“Patients are experts on how the disease affects their daily lives. The most helpful information is not simply where it hurts, but how it changes what they can and cannot do,” Dr. Meysami says.
Keep track of:
- Joint pain, swelling or stiffness, and how long morning stiffness lasts
- Fatigue and how it affects daily activities
- Skin or nail changes
- Flare-ups, including what may have triggered them and how long they lasted
- Amount of prednisone being used, if any
Instead of saying “My pain is worse,” provide examples, such as, “I can’t type for more than 20 minutes” or “I had to stop walking my dog.” “These functional examples help us understand the true impact of the disease and make better treatment decisions,” Meysami says.
This is a crucial step if your doctor needs to fill out paperwork for workplace accommodations, Mandelin says.
Some people rate their pain and functional impairment on a scale of 1 to 10 — with 10 being worst — to help their doctors understand disease severity, Mandelin says.
Take Photos of Symptoms
When possible, take photos of swollen joints, psoriasis plaques, nail changes, or dactylitis (“sausage digits”), Meysami says. He says these details are “extremely valuable” because symptoms can improve before a doctor’s visit.
Push for Treatment Adjustments if Needed
If you have persistent joint pain, worsening psoriasis, or difficulty completing everyday tasks despite treatment, tell your doctor, Meysami says. “Patients should never assume they simply have to ‘live with it,’” he says.
Your rheumatologist can suggest another treatment option, including biologic therapies and targeted oral medications, he says.
Another important sign is needing frequent courses of steroids or relying on pain medications to get through the day.
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