I remember one of our first appointments back to hospital after a number months: sitting in a room, waiting to speak to my son’s doctor and glancing over notes on my phone as I frantically texted my husband to confirm what a number of words meant. Words like eosinophil, ferritin, macrophages and IL inhibitors. I scanned my list of medications that my son was on that I would relay to the nurse: words like tocilizumab, prednisone, septra—all with “other names” too.
I remember the day I asked my son’s nurse for reference books on rheumatology and sitting at my son’s karate lesson as I read through the Sixth Edition Textbook on Pediatric Rheumatology. I remember reading my first medical paper, scanning for words I recognized and taking notes and gathering questions for his doctor. I remember every doctor telling me do not google! and doing it anyway, late into the night as my husband and I scanned the internet for health papers and references and learning to decipher what was legitimate medical information and what wasn’t.
Now, maybe not every parent has done this, but—as a parent of a child with a rare disease—I feel like these scenarios are not as unfamiliar as people may think. There is no one who loves their child with the deep unconditional love of a parent. It is no surprise that a parent would crawl to the end of the universe to find answers for their child, let alone test the limits of their knowledge. While doctors are busy researching the disease, parents are researching, analyzing, and becoming experts in their child:
- So many non-profit charities are started by patient parents searching for support and answers.
- Patient parents bring awareness and write about their experiences.
- Patient parents are an asset to the medical community because knowledge exchange is fundamental to medical research expansion.
Communities need to understand the needs of the medical experts but the knowledge and language that they are ‘taught/speak’ is complex and complicated. Patient parents and patients themselves are the bridge between the gap of understanding medical speak and sharing their experiences. As a patient and family, we are a fundamental part of the team that makes up our healthcare system.
But often we sit back scared or intimidated by the healthcare system, wanting desperately to understand but instead embracing this notion that we cannot understand it. But, if there is one thing I have learned about having a child with rare disease, it’s that medicine, science and research is all about not understanding it all!
The entire scientific method is:
- Make an observation.
- Ask a question.
- Form a hypothesis.
- Make a prediction based on the hypothesis.
- Test the prediction
Knowledge exchange starts with the willingness to understand, to continually ask questions, to form ideas, and ask even more questions. Knowledge comes with time and we are the closest ones to the patient subject, so no one can assess them better. As we ask questions and learn from experts, we become experts ourselves—but the important thing to remember is that with knowledge comes responsibility. Patient parents can be change makers: we can stand up and tell our story and we can help be apart of the answer.
If you or your child is facing a new medical journey and you have questions, don’t be afraid to ask! Don’t be afraid to look for resources! I’m not saying use doctor google; what I am saying is to ask for information and direction. Go to sources that you know can give you accurate information, take notes and ask more questions. If you are sitting in an appointment overwhelmed at the information you are being given—it’s ok. You’re ok. It might sound daunting now but it won’t always.
So if your child’s blood work has come back and the doctor says, “Your child’s eosinophil count is low, and we checked his titers and his ferritin levels,” you might do what I did and numbly nod, not understanding and worrying that this information is important and how you just need to somehow remember it all; that this information is pivotal to understanding your child’s needs. Instead, I would encourage you to find courage, to know that the doctor who is telling you this wants you to have this information and understand it. So smile and don’t be afraid to say, “Is that good? Bad? What does that mean?”
Knowledge comes from not being afraid to ask questions, and then taking that information and doing something with it. Learning isn’t easy, but you are capable, you will understand, and you will become the best advocate for yourself, your family member or your child.