Sharing the Journey: Pediatric to Adult Care

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What were some of the challenges or issues you faced when transitioning from pediatric to adult care and how did you overcome them?

I was diagnosed with lupus at 11 years old, and transitioned to adult care at 21 years old. The transition was a very scary time for me, as I had become very accustomed to my pediatric crew, and feared that my adult care clinic would not take the time to get to know me as well as the pediatric clinic. The transition turned out to be much better than I expected. I like the fact that I am able to express my feelings, concerns, conditions, etc. without being second guessed, since now I'm not thought of as a child. I like the fact that the doctors see me as an adult, as opposed to that little girl they remember when I was first diagnosed. However, I don't think I will ever be able to get that love and comfort back that was provided by my pediatric clinic, and some of that probably stems from the fact that they watched me heal. I overcame the challenges that came along with transitioning by explaining to my adult care clinic what I expected from them. Even in the pediatric clinic I was already responsible for all of my health care needs and did not rely on a parent or guardian- so that wasn't a challenge I had to face. I am very blunt with my adult care doctors. They see so many patients regularly, and each patient has a different need, personality, and expectation. By sharing my concerns and expectations with them, they have been able to go above and beyond to make me feel comfortable going to the adult clinic for the past five years. – Kayla B.

I'm a young adult with lupus and was diagnosed at 14, but experienced symptoms since 13. I found that having a mentor really helped me. – Jalesa

The hardest part of transitioning from pediatric to adult lupus care was definitely learning to deal with my doctor all by myself. Suddenly, it was my responsibility to schedule appointments, check my blood work and pick up my prescriptions. One strategy I developed while learning to visit doctors alone was making a list of symptoms. Every time I go to my doctor, when the nurse leaves after taking my vitals and before the doctor comes in, I jot down a list of my concerns, questions and worrisome symptoms. I also suggest bringing at least one parent with you to your appointments, especially if you have a lot to talk to your doctor about or if you have some serious concerns. Also, I appreciate that my doctor treats pediatric and adult patients, because I did not have to transfer doctors when I turned 18. I think finding a doctor who treats both pediatric and adult patients is very important if you are diagnosed with lupus as a child. – Becca M.

How to Take Control of Your Own Health Care

We know that learning to take on more responsibility for your own health care as you get older can be challenging. There are so many important things to remember, and making sure you’re on top of everything when it comes to managing your lupus can feel overwhelming at first. But with some help from these tips, you’ll feel confident as you make the transition from pediatric to adult care.

To make sure you are prepared for each doctor’s appointment...

• Think about what your doctor will ask you, and write down all your questions and symptoms before the appointment. Make sure your most important questions are at the top of the list.
• Always bring a list of your medications and dosages (or better yet, the medications themselves) to your appointments. Ask your doctor and/or pharmacist if anything new you are prescribed could interact with a medication you are already taking.
• Organize your medical history. This includes keeping a journal of your symptoms to show/explain to your doctor.

If you’re about to head off to college…

• Make sure you find a new rheumatologist in your college town. Schedule your first appointment plenty of time in advance and forward your medical history to the new office before your appointment.
• Try to make your first-year schedule as manageable as possible. You can still have time to socialize and take part in activities, but don’t forget to schedule in downtime.
• Register with the student accessibility office on campus right away. They can help you access resources for physical and cognitive challenges caused by your lupus.