I’ve had juvenile arthritis since I was a young child, but I was not correctly diagnosed until I was 11.
My rarer subtype (psoriatic) and uncommon symptoms already made getting a diagnosis complicated. But my diagnosis was delayed further because doctors frequently dismissed my case. They were particularly quick to write off my mum, who was a first-time parent. I think they thought she was too nervous or overprotective, when in reality, she knew what was going on the whole time.
While I’m glad I eventually found some fantastic physicians and was diagnosed with JA, the experience hasn’t left me. In fact, I’ve relived it a few times when physicians dismissed me in the last few years. Unfortunately, these things happen when you have an invisible disease.
The diagnosis process
If you’re desperately seeking a diagnosis for your child but no doctor seems to listen, you’re not alone. On average, people see six doctors over four years to have their autoimmune disease diagnosed.
While seeking answers, it’s easy to feel discouraged and even doubt yourself. If every doctor says things seem OK, why should you question it? But if you genuinely think something is wrong with your child, don’t stop seeking help.
Why it’s so hard
Diagnosing juvenile arthritis can be difficult because there’s no single test for it. Sometimes, lab work may indicate inflammation, but not all the time. And joint damage often won’t show up on X-rays in the early stages of the disease.
In my case, I had more unique symptoms. Juvenile psoriatic arthritis caused my tendons to swell, misleading some doctors to think I had tendinitis or other muscle strain. Looking back, I can see why my diagnosis was so delayed.
Tips for diagnosis
Try not to be discouraged. The experience can make you distrust doctors and hospitals, which is something I still struggle with to this day. But I promise there are good doctors out there. I highly recommend looking up doctors before scheduling appointments and reading patient reviews. Seeing a good review — even just one — is often a great sign because someone went out of their way to write that comment. People are far more likely to give bad reviews than leave good ones.
Also, preparing for the appointment can sometimes yield more productive results. Bringing in a log of your child’s appointments, photos of swollen joints, videos of gait changes, and anything else you use to track your child’s condition can help a lot.
Trust your instinct
Parents, I urge you to trust your gut feeling: If you know your child is suffering, then seek an answer for them. Having doctor after doctor tell you that nothing is wrong can be discouraging. But remember that the doctor does not live with your child, and they do not witness what your child is going through or the care they require. You know your child best.
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.