Bugs Bunny was blunt when greeting a friend or a stranger. It is probably not how you speak with your healthcare providers, but it makes you think about how you communicate with them. Your relationship with your rheumatologist can last for years–it can be a special one depending on your health approach. Some of you reading this are still with a pediatric rheumatologist, and hopefully, you have noticed that changes have happened at your visits as you’ve gotten older. While you’re always the focus of conversations, maybe you are realizing how much you are being asked to answer questions yourself. Having an open and honest conversation with your provider (whether adult or pediatric-trained) is one of the most important skills you need to learn as a patient. Many patients can find the relationship intimidating since your provider has so much knowledge about medicine and the health system and is an “authority” on rheumatology. But really, YOU are the expert on yourself! So, you need to come to the relationship being able to shape conversations and direct your care.
As with any relationship, you never want to “disappoint” people who care for you like your rheumatologist. It may be easier to say a “little white lie” about your health being fine than telling how you are truly feeling or the reality about how you care for yourself. For example, it’s easy to say, “Yeah, I take my medicines every day” instead of “I really don’t take my medicine except when I feel bad, and that hardly happens.” Being honest about what you do helps guide care. It could be great that you feel well off medicines and your tests support it so that your provider could say, “Wow, looks like you are in remission!” This can pose a challenge if your tests look active with your condition, your rheumatologist thinks you are still on medicine, and they may end up changing or adding medicines because things don’t look right.
We know that young people with rheumatologic conditions want an open dialogue with your rheumatologist. This is especially true when it comes to dealing with symptoms and signs of active inflammation from their condition and how to deal with it. While we may ask directly about your condition and its impact on you, we want you to share what is going on in your life–school, work, sleep, exercise and eating habits, and relationships! It rounds out who you are and how well you are doing. We also know that it’s hard to bring up topics that seem out of the realm of your condition with the rheumatologist– like the use of alcohol or drugs, issues about sexual or reproduction questions, or even mental health concerns. While your rheumatologist may be unable to address all these issues, they can provide resources for you or guide you on how to address them. Your rheumatologist may rely on your primary care doctor or other specialists for answers to some questions. But you can actually educate your rheumatologist about resources you’ve found along your health journey that can be shared to help others. Remember, this is an open dialogue so your provider can learn from you just like you learn from them!
How do you prepare for this? Your first visit with a new rheumatologist may not be the best time to unload all your questions as you are trying to get to know each other and set up trust with each other. However, if there are pressing concerns, it’s better to ask things up front to show you have an active role in your care and decision-making.
Ideas for preparation include:
Write down in a notebook or put in your phone the questions you have. A good opportunity to get them answered is to give them to the check-in person when they ask about your current concerns and can alert the provider.
Practice asking the questions with a parent, partner, roommate, friend, or even your pediatric rheumatologist (if you are still transitioning to an adult provider).
If your clinic system has a patient portal to communicate, use that as a way to contact your provider if you’ve forgotten to ask things in the clinic. Always check with them if this is how they prefer to communicate.
Share your upcoming goals, plans and expectations as they can guide how treatments can be adapted to achieve them.
We hope these tips help you with this journey to keep yourself well!
Share any comment that has been helpful in your communication with your rheumatologist. Let us know the challenges you may have had and how you have been able to overcome them.
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