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?
I agree that there is really nothing more important when parenting a child with different needs than the ability to advocate for them…which is not the easiest to do being an introvert…yet at the same time a task impossible to ignore when you know it will make a difference for their lives. So, with that being said my husband and I have turned doing so into sort of an art form. We do not accept no for an answer. The specialist my daughter’s nuerologist says she needs to see is not accepting any new patients? Maybe not…but they will take my daughter because we will politely bother them until they do. She’s been in the hospital for three days and you haven’t figured out what’s wrong? Sorry…but I’m not taking her home until every possible test has been performed to figure it out. I don’t know how it always works or if it’s just that they think we’re completely crazy and affraid to not do whatever it is…lol…but either way we’ll always do it for her.
Devin – what you describe here sounds so much like our experience advocating for Bryson. I’d love to learn more about your daughter. Do you blog about her? WordPress is telling me your blog has been deleted. Is there somewhere else I can follow you?
That’s odd, it’s not deleted. I tried to follow someone else earlier and it said the same thing about their blog. I’m not sure what that’s all about? My blog is really new, but yeah I do and will be blogging about her since it’s just about our life in general and being that I home school her she is so much of my life…that and my experiences with Multiple Sclerosis which also has required a crazy amount of advocating for myself. Hopefully whatever the issue with the deleted thing will be figured out soon!
Devin – I found it and have followed. It looks like your WordPress profile is linking to the wrong URL.
Here’s where I found your blog.
I am president of my building’s strata council. Not sure how that happened given this is my first strata experience and I recently moved in, but there you go – a leadership opportunity for me. Unfortunately, the council is rife with complainers who shower me daily with emails about what isn’t getting done but never step up to help.
We also have an illegal pot dispensary business in the building that I am advocating hard to get rid of. The smell, the noice, etc. I am working hard on this issue but I am told I need to take the issue to court. It is a thorn in my side, but by going through the hoops and pushing through the system I feel empowered. Will I win? Who knows, but at least I am taking positive action and that feels good.
Sounds like you’ve got a happiness roadblock to overcome Sara! Good thing you are able to keep a positive attitude!
Powerful post, filled with wisdom! Thank you!
Thank you Roda! Glad you enjoyed it.
I was eagerly waiting for this after yesterday’s post. Great stuff! Would you consider writing about procrastination, and how to overcome it? Either way, great job!
Thank you! I love requests, I will put overcoming procrastination on the calendar, but I may not get to it for a couple weeks.
I love this, Keith. I’ve had to advocate a lot for my son, Jy. In nursing we learn about advocacy, but it’s very different when you have to put it to the test with your children.
The nursing perspective is interesting Ipuna. You must see-first hand the difference between patients who complain and patients who advocate.
Absolutely. Same with nursing! There are complainers and patient advocates.
Somebody was advocating for me. I learned it from that person. Now I have to advocate for my daughter: there is no other choice.
I’ve had to advocate for my son Bryson as well as for myself in the health care system. It feels a little more selfish when I do it for myself. When I do it for Bryson, it always feels right.
[…] our minds and re-wires our brains to seek out more things to be unhappy about. Instead, we need to change our situation by advocating. And when we can’t our situation, we need to change our attitude […]