Several years ago, I had a hysterectomy because I was crippled with pain from endometriosis. Not a fun thing, surgery, but I was looking forward to healing and getting a chance to go back to my life without, you know, constant agony.
When I woke from surgery, I was in blinding pain. I begged them to put me back to sleep (they wouldn’t) or at least give me more medicine (they would). But even after I was entirely snockered on ridiculous quantities of everything they could find in the pharmacy (I learned what it means to fall down a K hole; ain’t I the cool one?), the pain was so bad I could barely breathe. Which is in itself a problem, since in the process of all this unpleasantness, my right lung collapsed.
So, my first epidural. It didn’t take (read: did not help one iota), but since I had a tube in my spine, I had to go to the ICU instead of the med/surg floor. Not like I cared. I just wanted Brian to hold my hand while the nurses pumped enough drugs into me that I could go to sleep and escape the pain. The first thing the ICU nurses did when I got there was kick Brian out of the room (Why the HELL do they do that?) and I was lying in the bed, crying and moaning and calling out for help the way a person in terrible pain is wont to do, and what did the nurse do? Why of course, she scolded me.
“For God’s sake, I’ve had surgery and it just doesn’t hurt this bad. Be quiet!”
“Please don’t be mean to me!” I whimpered, like a two year old caught sneaking a cookie.
“Oh, get over yourself.”
So, I lived through the rest of that day and then the long, long night. I vaguely remember my mom (who is a hospice nurse and therefore something of an expert on pain control) trying to convince people that I’m not a big baby about pain; for goodness sake, I gave birth to all my babies without pain meds, the youngest one in my backyard! They weren’t buying what we were selling and continued to treat me like the world’s biggest whiner. (And even if I AM the world’s biggest whiner, does it necessarily mean the pain isn’t real? Or that I should suffer for my sin of being annoying?)
The next day, I had a nurse who was even worse than the first one. She seemed to take my collapsed lung as a personal affront. The oxygen wasn’t turned up high enough, so every time I would start to doze off, my sats would fall into the 60s and the alarm would sound and wake me. When that happened, the nurse would charge into the room and screech at me, “You have to breathe! Take deep breaths! Watch me!” Then she would demonstrate the process of deep breathing to me because, apparently, I am just about as smart as your average turnip. This went on for hours until she finally relented, with a huge sigh of annoyance, to call the respiratory therapist to come turn up the oxygen.
That problem solved, they pulled out the useless epidural catheter and sent me to a bed on the postpartum floor (all full at the inn, doncha know) where I got sicker all day long, until I couldn’t move my head because of the pain. After an agonizing trip to the bathroom about midnight, I started puking my guts out (I mean, it was seriously violent; broth and applesauce everywhere), my lips were invisible, my tongue was a charming shade of beige, and I felt like I was floating about 2 inches above the bed. You’ve probably already figured out what was wrong with me, which makes you more observant and attentive than the medical professionals who were taking care of me.
Finally, someone in that hospital decided that maybe, just maybe, something wasn’t quite right. They drew some blood and discovered that my hematocrit was 16% (A normal crit is 36 – 44%). A CAT scan revealed a massive hematoma in my pelvis, the result of an internal stitch that slipped and the cause of all my pain. Back I went to the ICU, this time with some generous stranger’s blood dripping into my arm, to begin my recovery. Thankfully the bleeding stopped by the next morning and I didn’t have to have another surgery to fix it.
I’m not telling you this story because I think it’s all that interesting, but because the parallels to our experience of getting someone to hear us about Carter’s problems are so strong.
By the time Carter was about 6 months old, I was talking to doctors in earnest, seeking a solution to his endless misery. At that time, we were terrified that there was something physically wrong with him and that he was crying from pain. We only wanted a doctor who would help us find the thing that hurt him and make it better. It took us months to get any doctor to order some tests. We went in circles, begging for help, describing his symptoms, giving his history, and leaving disappointed. Some doctors gave us books. Several suggest that I take anti-depressants. Most sent us out of their offices with nothing but platitudes. None was willing to get into our boat and really look for a diagnosis and a solution. We would have failed in the search for a solution and a diagnosis, of course. Carter wasn’t in physical pain and didn’t have anything that could have been named when he was an infant.
But I can’t emphasize this enough: it would have done Brian and I, and therefore Carter, more good than a bucketful of cash to have someone, some doctor, get in it with us, to acknowledge that something wasn’t right with Carter. If any one of the doctors we saw in those first few, terrible years had said, “Wow, yes, something is definitely up with your son. I’ll help you as much as I can until we can diagnosis this,” we would have been spared unfathomable amounts of self-doubt and familial anguish.
When I was in the hospital, me saying I was in pain was not evidence of anything. No one listened to me; they waited to take me seriously until they had some lab results to confirm what I’d been saying all along. With Carter, no one really listened to us, his parents, describe his problems. No one took us seriously until he went to school, at which point there were teachers confirming what we’d been saying all along. Suddenly, there was weight and depth to what we’d been saying.
I will probably never understand why this happens, why patients’ or parents’ concerns are minimized or dismissed.
Perhaps I could understand, but honestly I don’t care to. I think it’s unconscionable. I acknowledge that health care providers are overworked and overwhelmed and sometimes wish that their more difficult patients would go away. I also understand that readily available information via the internet, plus direct-to-consumer drug marketing, have caused some people to be concerned about problems that are not problems. (A physician friend calls these the “worried well.”) None of that, however, excuses dismissing patients’ or parents’ concerns out-of-hand.
Today, Carter gets excellent care from a team of professionals who listen to us and who we respect. It took us seven years to get to this place, where we know that Carter is getting all that he needs. Certainly, at 2 or 3 years old, we would not have considered psychiatric medications, but all the other therapies and services that he now receives would have benefited us then, and maybe even more since his maladaptive behaviors were less entrenched. Our entire family would have suffered much less. We’ll never know, but it’s possible that some of the frightening episodes of the past year could have been avoided, or would have been less acute and frightening.
None of this is meant to sound ungrateful. Carter is still very young, and for many families, the level of services that we receive is unfathomable. I ache for those families who are fighting to keep their children alive and functioning without the help they need. I weep for the parents who search for answers and who need, more than anything, some kind words and who can’t get them. I cheer for those who are out there advocating and lobbying for kids who are behaviorally and emotionally different.
We parents of challenging kids want the same thing that every parent wants: to watch our kids grow up as healthy and happy as possible, to see them rise to meet challenges and feel proud of themselves. We need help to give us the best chance of making that happen, and the first step in getting that help is to be listened to, truly and deeply heard.