How JA Parents Can Be Proactive at Rheumatology Appointments

How JA Parents Can Be Proactive at Rheumatology Appointments
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Before every doctor’s appointment, I write down my questions on a little sheet of paper and put it in my pocket. It feels better to pull out a piece of paper than my phone, plus it’s a physical reminder to ask all the questions I have.

I started doing this when I was first diagnosed with juvenile arthritis. There are times when the list is quite long, especially if I’m seeing a new doctor.

Sometimes, my questions make me feel like I’m an annoying patient. But in reality, I’m an informed patient — I read up on my conditions and ask questions about the things I can’t find answers to or that are specific to my health. And I’ve done well with doctors who are comfortable with patients who aren’t afraid to speak up.

Why being informed and asking questions is helpful

Reading about juvenile arthritis, treatment options, and complementary therapies from reputable sources helps you make informed decisions about your child’s healthcare. For example, you may read about treatment options your doctor hasn’t brought up yet and ask about them. Your questions and concerns can lead to productive conversations and decision-making.

Learning more can only help your child’s rheumatology appointments go more smoothly. Doctors aren’t computers or robots, they’re humans who make mistakes, forget things, and even have bad days. It never hurts to question things that don’t sound quite right or bring up options you’ve read about. The doctor is there to help not only treat your child but also guide your family and help you understand what is going on.

Times when I wasn’t informed

I’ve been there, done that. There have been times in my past when I didn’t speak up as much.

In the past, I didn’t ask questions because I didn’t know what to ask. I was concerned about my health, but I didn’t know what tests to ask for. 

At one point, I didn’t bring up treatments I was interested in or tests I wanted to be done. After being turned away by one doctor during my JA diagnosis process, I was grateful for a new doctor to have taken my case. But I realize now I didn’t have to be so complacent. My new doctor wasn’t doing me a favor by handling my case — they had a different opinion than the other one and believed I needed medical care.

Sticking up for yourself

If you feel like you can’t ask your child’s doctor questions or you disagree with their approach, it might be time to find another doctor. Your questions and concerns are valid, and you shouldn’t feel intimidated by the physician to the point you feel like you can’t question things respectfully.

If the shortage of pediatric rheumatologists makes getting a new doctor impossible, be the best advocate you can be. Write down your questions, but try to limit them to no more than five or so to be respectful of the doctor’s time. And be informed through reliable resources; if you aren’t happy with your child’s current treatment, learn what might be an option and ask about it at your next appointment.

I always keep in mind that doctors are people, too. We all have different personalities that might not mesh well together. All we can do is be respectful of one another and do our jobs. For parents, that includes being informed of their child’s medical condition and treatment.

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Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to juvenile arthritis.

Elizabeth is a young adult who has dealt with juvenile arthritis since she was a small child. However, her pain hasn’t stopped her from working on a product design degree in Boston. Her passion is to create products that make life easier for the chronically ill, such as shoes and walking canes. When she’s not in class, Elizabeth enjoys writing about how she’s coped with arthritis at such a young age. You can find more of her writings at ArthritisGirl.Blogspot.com and on Instagram @GirlWithArthritis.
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Elizabeth is a young adult who has dealt with juvenile arthritis since she was a small child. However, her pain hasn’t stopped her from working on a product design degree in Boston. Her passion is to create products that make life easier for the chronically ill, such as shoes and walking canes. When she’s not in class, Elizabeth enjoys writing about how she’s coped with arthritis at such a young age. You can find more of her writings at ArthritisGirl.Blogspot.com and on Instagram @GirlWithArthritis.

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