You Are the Expert

When a new condition is discovered, it is typical to be caught by surprise, unfamiliar with the specifics and the implications of what this diagnosis means for your family and child. Often, difficult decisions need to be made quickly. There is so much you need to know and no way to know it.

In circumstances like this, it is natural to rely on the designated experts for guidance. Expert advice is valuable and plays a critical role in the decision-making process. Listening to the experts, allows you to act more quickly and efficiently than if you were to start from the beginning, personally collecting information and data on the condition at hand. 

Yes, listening to the experts is a natural response in circumstances like these. Unfortunately, as parent caregivers, we often discount our own experience and knowledge in the process. We think that because we are not a designated expert, we do not have anything of value to offer to the situation. We feel “in over our head” and we hesitate to exert our knowledge, to question advice or to advocate when we feel, in our gut, something is wrong.

As hard as it is, it is critically important that you have confidence in the value of your own expertise.  A key part in developing this confidence comes through recognizing the limitations of your chosen experts. It can take years to collect enough personal experiences to see these limitations for yourself.

Below, are four hard lessons I learned about the limitations of professional advice, and why you are the expert your family needs most.

Lesson #1 - Experts are limited by their expertise.

Experts have devoted a lot of time and attention to their education and to acquiring hands on experience. This makes them very knowledgeable and proficient at one thing, or one area of study. When you need someone who is very good at that “one thing,” you’re going to seek them out and trust them to fill that need, even to the extent of putting your life, or the life of your child in their hands. You do this because you recognize and value that expertise. However, you wouldn’t go to a dentist to fit you for glasses because you also recognize that there is a limit to this expertise.

Yet, so often we think that being an expert means that they know everything there is to know about their one thing and everything else related to that one thing, too. For example, if they are a brain surgeon, we expect that they are also going to be an expert in all the intricacies of the brain, blood vessels, nerves, etc. This is not necessarily true.

Let me give you a personal example:

Several years ago, I was treated to correct an embolism in my brain. This included several tests and two surgeries to disrupt blood flow to the embolism.  Almost immediately after treatment, I started having terrible side effects; migraines, dizziness, loss of balance, double vision. These are all terrifying symptoms of stroke for which I had an elevated risk and I had been told to report them diligently. Whenever I did, I was treated respectfully and with care, but I was told that they did not know the reason for my symptoms and that it very well might be my “new normal.” I was in and out of the ED with concerning symptoms many times that year and, as you can imagine, quite beside myself with anxiety and fear of the unknown.

It wasn’t until I went in to see my family doctor, for an annual physical, that I shared with her the symptoms I had been having. Within two minutes, no exaggeration, she told me exactly what my problem was. I had experienced nerve damage to a major nerve inside my head.  Every symptom I had matched this diagnosis and, for the first time in a year, I was reassured that I was not in critical danger. Best of all, the nerve could potentially heal, I was not condemned to a “new normal” for the rest of my life.

So, why did my family doctor figure it out so quickly when my expert did not? It’s because my family doctor had a broader more holistic view and experience to draw from. She was not focused only on the procedure that was performed. I do not blame my surgeon for missing that diagnosis because I understand the limits of his expertise, expertise I highly value and very likely saved my life.

This and other past experiences with limited expertise have taught me that as a patient, and as a caregiver, it is up to me to have a wider range of experts on my care team and to never assume the extent of any one expert’s knowledge or ability.

This is also why seeking a second opinion, or two, is always, always, always – did I say always? - a good idea!

READ MORE: Five Reasons Caregivers Need a Second Opinion

Lesson #2 - Experts recommend what they know best.

Experts are often considered as such because of the time they have dedicate to learning and developing hands on experience. This is what makes their expertise so valuable. They know their craft well and have confidence in their level of knowledge and execution of skill. It is understandable that they would stand by what they have worked so hard to master.

However, we expect our experts to continue learning about new developments, treatments, and technologies etc. in their area of expertise. We are, after all, relying on them to provide us with up the most up to date and accurate information we will use to make life altering decisions. Unfortunately, this does not always happen.

Let me give you a personal example:

Early on in Our Girl’s journey with brain cancer, we were set up to consult with a pediatric radiation oncologist at our treating hospital.  We were not actively considering radiation, at the time, but we were beginning to learn as much as we could about our daughter’s diagnosis and potential treatment options. We came to this meeting with questions prepared, based on very basic research of information that was widely available.

During this meeting, we asked the expert about a newer, but not that new, type of radiation treatment that was only available at a few locations in the country. This technology was proven to target the tumor very precisely, while sparing more healthy brain tissue than the standard form of radiation which was offered at our treating hospital.  This meant less risk of cognitive side effects and secondary brain cancers developing over time.

When we asked the expert what was different about these two forms of radiation, and why one would be preferable to the other, we were told that there was no difference and there was no reason to choose the new treatment over the standard. Several year later, we traveled out of state so Our Girl could be treated with the latest and greatest of this newer type of radiation because it is, in fact, better.

Unfortunately, we lost some confidence in our treating hospital that day. We expected an expert in the field to be more informed on upcoming technologies related to his area of expertise. If we could come up with more information in a couple minutes on Google (from reputable sources of course) than the expert could give us in our consultation, that was a problem.

This really isn’t an uncommon experience.  Experts know best what they work with every day and I feel that most of them really believe that the services and care they provide, and recommend, are the best. They haven’t experienced anything else first hand and so they truly may not know any better.  Unfortunately, that just does not cut it when it comes to finding the best care available for my child.  

Experiences like this have taught me that, as a caregiver, it is my responsibility to research and to learn as much as I can about my child’s condition and care options. It is my job to ensure that I have the information I need to discern the quality of care I am being offered.

Lesson # 3 Experts only tell you what they think you need to know.

When faced with a new diagnosis, we often rely on the experts to provide us with all the information we need to understand the complexities of our child’s condition. We expect them to give us the details we need to mentally, and logistically, prepare ourselves for what is coming. Unfortunately, it is not unusual to discover that the information we were given is incomplete or just enough to get us to the next appointment or the next test. As a result, we feel blindsided when everything we thought we knew changes.

Let me give you a personal example:

When Our Girl was first diagnosed, the biopsy showed that she had a low grade, slow growing tumor type. We were told that this was good news. If you must have a brain tumor this was the one to have. We were told that it was possible that the tumor would never change and might never need further treatment. We were told to go home, focus on recovering from surgery and come back in three months for a scan. There was no mention of what might happen if the tumor did change. It all seemed very positive and hopeful.

Now, what they told us is absolutely true but it was also the absolute best-case scenario. So, imagine how disheartened we were when, just a few months later, we were preparing for chemotherapy. Imagine how devastated we were when our research showed us that many children, with our girls’ tumor type, spend their childhoods fighting a chronic brain cancer with years (decades) of chemotherapy, surgery and/or radiation. One could argue that a little bit of a heads up, framed in realistic expectation, could have spared us much disillusioned anguish.

Over the years, we have experienced several members of our various care teams holding back on information, they decided we did not need to know: scan changes they did not think worth mentioning just yet, being a little to matter a fact about treatment options or not being all that forthcoming on the actual odds a treatment would work, etc.

It has happened far too many times for me to believe that it is a result of our care providers not caring about Our Girl or about our feelings. I believe it is actually the opposite. I think they care a lot. So much so, that they don’t want to upset us with information that may never materialize into something we have to deal with and won’t change how we manage our child’s condition in the meantime. It’s a, “don’t worry about until it happens, because it might not ever happen” reasoning. I can appreciate this and I also understand why some parents might be thankful for this approach, while others who want to know what’s coming may not. I have been on both sides. Eventually, long-time, well-researched parent caregivers learn to see through this approach and predict what is coming anyway.

Another reason we may not get as much comprehensive information, from our experts, as we might expect, is that care professionals are busy. Even if they would like to, they don’t have the opportunity to sit down with every newly diagnosed family and educate them on the ins and outs of their child’s condition and all the potential challenges they may need to prepare for. Frankly, it’s not their job and it’s just not reasonable to expect our experts to be our only educational resource when learning how to manage our child’s condition.

Experiences like this have taught me the importance of proactively educating myself on my child’s condition and the care resources/treatments available. It has also shown me the importance of building relationships with other parents who can provide a realistic view of what living with this condition looks like and give first hand guidance and advice for how to manage it.

Lesson #4 - Experts do not know you.

We tend to think that what makes an expert’s opinion so valuable is how many different experiences they have had and how many different patients they have seen. We expect that, sometime along the way, they have addressed every issue, solved every problem, and learned everything there is to know about their area of expertise. We assume there is nothing about our child that could surprise them.

However, as much as an expert knows about a certain condition, or as much as they might know about children in general, they do not know that much about your child, next to nothing really. They don’t know their history beyond what you wrote down on the form. They don’t know how they act when they are mad, scared or hurt. They don’t know that having their sibling in the room makes them 100% more likely to cooperate during therapy, and so on. Your child is so unique from any other child that, when it comes to them, only YOU are the expert.

Let me give you a personal example:

Several years ago, we were in the hospital with Our Girl as she recovered from major brain surgery. We had traveled out of state and so we were not working with our regular care team. Our Girl was struggling with lots of pain and, in trying to cope with this pain, she changed her breathing pattern which, in turn, affected her oxygen levels. The care team was concerned something deeper was at play and wanted to take her out of the room for tests.

Having been through a previous surgery with Our Girl, and knowing her better than anyone else, we recognized her pain level and her distress in trying to cope with it. As caregivers and advocates, my husband and I had to push back hard on the experts’ advice. We insisted that they not cause even more pain by moving her, and increase her pain medication to see if it helped her breathing. We asked that we try this approach first and, if it didn’t help, then we would consent to more tests.

They agreed and, a short time later, she was more comfortable, her breathing was less distressed and her oxygen levels had normalized.  We spared her unnecessary pain and distress, because we knew our daughter well and had confidence to stand in that knowledge and advocate for what she needed.

In the end, our care team acknowledged the value of our input, that day. They recognized the importance of listening to parents’ expertise when it comes to their kids. I believe that most care providers and experts also recognize this and welcome parent caregivers as partners in their child’s care. The real challenge is getting parents to recognize the value of their own knowledge and to have confidence in expressing it.  

Experiences like this have taught me to trust my gut when I feel something is not right and to have confidence in my instincts. I have also learned that care providers want our guidance, as we partner to effectively care for our children, and so we shouldn’t be afraid to give it.

The examples I have shared above are mostly related to health care because I have a lot of those experiences to draw from. However, all the points I made are relevant to any type of expert you might rely on, whether they are related to health care, therapy services, education, online or media resources or even a leader in the larger community.

Anytime someone presents themselves to you, as an expert, hold them up to these lessons before taking their advice for granted. We should always take expert advice into consideration, but we should also make sure that we are educating ourselves independently and seeking opinions from other experts, as well. Most of all, trust the knowledge and experience you already possess. Because, when push comes to shove, only YOU are the expert whose knowledge and experience guides which actions are relevant and beneficial for your family in your unique circumstances. Be confident in that expertise!

Self-Care Action Discussed in this Post:

Review the lessons shared in this post to validate, in your own mind, that you are the expert when it comes to the care and well-being of your child and family.

Related Posts:

• Five Reasons Caregivers Need a Second Opinion
• 9 Strategies to Minimize Scanxiety
• How to Manage Anxiety from Past Medical Trauma
• 10 Hospital Stay Survival Tips for Caregivers
• Hospital Stay Survival Kit for Caregivers