Patient Practices with Psoriatic Arthritis
2001. That’s the year I was pregnant with my daughter, Nora, and the year I discovered what it felt like to be free of symptoms of psoriatic disease. Like many, I went into remission when I was pregnant. After my daughter was born, when my symptoms returned, I was determined to find a way to have a better quality of life.
My role as a patient changed from a passive one to an active one. Prior to 2001, I showed up at my appointments, listened to doctors with full trust, and did what they said, no questions asked. I still listen to my doctors, but now I also do research and advocate for my own best interest.
Patients tips for doctor's appointments
During the years since then, I’ve learned a few things that have helped make my conversations with providers a little smoother and more effective. I’ve discovered how to make the most of my appointments.
I’ve even learned how to find the doctors who mesh with my personality and to quiet myself so that I can work with those who don’t necessarily align with my personality. Here are tips on best practices to get the most out of your care, based on what I’ve learned along the way.
Answer questions honestly
The doctor walks in the door and says, “how are you?” What do you say? If you answered “fine” or “good”, that’s the wrong answer, unless that is how you are.
Those of us with psoriatic arthritis are skilled at pretending that we feel well. This is not the time to do that. Your doctor needs to know how you’re feeling. Answer that question with complete honesty.
Give additional details
Tell your doctor how your symptoms are affecting you. If you simply say, “I have arm pain” but don’t mention what the impact is of this pain, your doctor doesn’t have a way to know how troublesome it is. She won’t see your arm in action, other than the limited activity during an exam.
When you talk about your arm pain, give examples of how you are affected by this pain. “This pain keeps me awake at night” or “Painting is my hobby and I am now I can only paint half of the time that I could before.” If the pain is constant or intermittent, be sure to mention that too.
Being direct can be good for you
Keep the small talk to a minimum. This one is hard for me because I love to talk, and my health is my favorite subject. When I had to ask my rheumatologist for a second opinion, I had to remind myself that I just needed to ask for it. I did not need to offer up any additional information.
Be direct and just ask for what you need. Then stop talking. Give the doctor a chance to respond. If she has additional questions, she will ask.
Yes, I used patient as a verb. No one has more experience with your body than you do. In most cases, you have choices about your healthcare. Listen to the advice from your healthcare professional. Talk to other trusted healthcare professionals, then make your decision.
If you feel your doctors have overlooked something or that your own experience is not in agreement with your healthcare professional's assessment or advice, I encourage you to share this with your healthcare team and ensure that you have a plan in place to ensure your health.
Good luck on your patient journey. Have you discovered ways to be a better patient?
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?