I was sweet 16 and ready for the summer of a lifetime: I had my first boyfriend, great friends, and tons of adventures planned. It also was the summer I had some complications due to a treatment I used for juvenile arthritis.
Although I had some beautiful memories from that summer, I felt like I spent more time with my pediatric rheumatologist and nephrologist than I did with my friends.
Kids with JA often require frequent visits to rheumatology specialists to ensure that JA isn’t affecting their growth. As a kid, I typically went once a month. Some kids may go more often to receive treatments such as injections or infusions. They also may have additional specialists and require extra eye exams. I used to go every three months.
These trips can be very intrusive to your child’s and your lives, especially if you have to travel far or frequently to see the doctor. Not only is it expensive and physically tiring, but also it becomes emotionally draining. Medical burnout is a real thing.
Admittedly, I didn’t mind having some time off school. I was in heaven when my pediatric rheumatologist started seeing patients only on Friday! But other times it felt like it was out of hand. When it feels like your family is practically living at the hospital, here are a few things to consider to help make things a little more bearable:
Virtual doctors’ appointments are becoming more widely available, even for pediatric rheumatology. Telehealth is an excellent option for those who travel great distances, though it’s probably not a practical option for every rheumatology appointment. The doctor needs to be able to examine your child’s joints and gait, something a webcam can’t do.
That said, it still might be an option for your child, depending on their condition. If you think it’s a good option for your child, talk with your child’s doctor and insurance company to see what options are available.
Learn to do treatments at home
Many of the treatments kids use for JA are delivered via injections. While you can do it at home, many are hesitant and go to a clinic instead. I was fearful of learning to give myself injections or even having my mum do it.
For a year, I went to the doctor’s office every Friday to receive my injection. Although it didn’t take long, it got old quickly, especially for a 13-year-old.
A few years later, I switched medicines and needed two shots a week. I buckled down and learned to do it myself. It’s not a solution for everyone, but it helped me feel like I had a life away from the doctor’s office. As a bonus, it also gave me a sense of control over the situation.
Something to look forward to
I think incentives go a long way. Having something to look forward to made things much more manageable for me. My mum and I usually had lunch together after an appointment, which I looked forward to.
But it doesn’t have to be a big thing like going out to lunch. It also could be a favorite dinner later that night, a family movie night on Friday, stickers or dollar store toys for little ones, or being allowed to make slime. You also can permit your child to use their iPad, Nintendo Switch, or phone extra on the day of the appointment — whatever works for your kid!
Self-care for parents
Parents, these appointments are hard on you, too. When I was a kid, I never realized how expensive it is to take time off work, pay copays, and arrange for transportation. It only dawned on me how much my parents sacrificed for my healthcare when I became an adult.
Take some time for self-care. Bring along some of your favorite snacks, treat yourself to Starbucks, bring a new issue of your favorite magazine, or do whatever else you need to do to get through it. It might not be much, but having a little something special can help brighten your day and make it a little easier to get through.
This, too, shall pass
My summer came to an end, and eventually, so did the constant stream of appointments — for a while, at least. I had good years when I didn’t need to go as much, and then years I felt like I was under a microscope again. At times, I felt burnt out and had to remind myself that keeping up with my appointments and treatments would help me in the long run, so hopefully, I wouldn’t have to come back so often.
It was tough, but worth it.
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 Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.
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