Families of sick children are supposed to wait patiently. The clinic nurse had made this clear eight weeks earlier when my wife Laura first called to check up on Bryson’s lab results.
But what was supposed to be a four-month wait had stretched to half a year of waiting to find out if Bryson had tested positive for a degenerative disease that would prevent him from reaching adulthood. So Laura ignored the ‘don’t call us; we’ll call you’ directive and dialed again.
“The results still aren’t back,” the nurse said. “We’ll call you when they are.”
When Laura pressed, the nurse reluctantly agreed to check on the file. A few minutes later, the nurse returned to the phone to sheepishly acknowledge that an error had been made. Bryson’s blood was never sent to the US lab for testing.
The reality of this – another four months of waiting – hit Laura hard. She hung up the phone and wept.
This was several years ago. Thankfully, Bryson eventually got a diagnosis of GRIN1, a rare genetic condition.
But through his health issues and my kidney disease, our family has learned an important lesson: When you’re navigating the health care system, it pays to be pushy. Patients — and parents of patients — need to be advocates.
Yesterday, I wrote about how complaining is toxic, killing our own happiness and making us less attractive to those around us.
But this doesn’t mean we sit back and take whatever life throws at us. As Luminita D. Saviuc writes, the key is to change things if we can. And when it’s something we can’t change — the weather for example — we need to change our attitude instead of complaining.
So how do we stand up for ourselves and our families if complaining is off the table?
Complaining is easy but it’s useless. Too often, we complain to people who have no power to change our situation. Even when we complain to the person responsible for the problem, we are so full of fear and resentment and anger that we are actually harming, not helping, our situation.
Advocacy is hard but it’s useful. Advocacy is about fighting for our rights and the rights of those around us in a way that can actually improve the situation. Advocacy is challenging because it means trying to look at a grievance from a detached, emotionless, outsider’s perspective. This allows us to see the situation clearly so we can act in a way that will solve our grievance.
So how do you know if you’re complaining or advocating?
If you’re talking to someone who can’t improve your situation, or if what you’re doing makes you feel angry or powerless, you’re probably complaining.
If you’re talking to someone who can actually fix the problem, and what you’re doing makes you feel calm and empowered and generous, you’re probably advocating.
What about you. What successes or struggles have you had with advocacy and complaining?