People who equate truth with fact are missing the point.

To scream into a vacuum…

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.”

Seriously.

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.

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10 comments to To scream into a vacuum…

  • Wow. What an amazing story. I agree that many times medical professionals disregard a mom’s gut feeling. I told my son’s Dr. that he was sensitive to nitrates, food color and other preservatives and she looked at me like “Ok little girl, you can go home now and play house.” But after a month of a strict diet without these things (and a whole foods bill of $300) his skin was completely cleared. I wish that more doctors would listen because sometime we are not just crazy moms, and all times we are the experts to our own children.

  • The docs not listening until the teachers backed you up? THAT makes me want to scream.

  • I have a friend who shared my pediatrician for quite a while. I loved this doctor, he calmed me (I have anxiety problems, which got worse with pregnancy/birth/parenting) and he caught early pneumonia in my daughter once when another doctor had already dismissed her symptoms as a virus.

    However, my friend had a very different experience with the same doctor –she’s an educational psychologist, so she knows a lot about how kids are supposed to develop, and when she expressed concern about how her daughter was growing, this doctor dismissed her concerns. He was wrong –her daughter had an underlying bacterial infection for years, which finally put her in the hospital with septicemia.

    I’ve never understood how this doctor could be so great for me, and yet fail her so terribly.

    The whole doctor-patient relationship is so frustrating, and even more frustrating when it’s your child, rather than yourself, that you’re trying to help.

  • I think it’s so true that it’s exponentially more difficult when it’s your child and not you. In fact, part of the way I survived my terrible pain after surgery was by constantly focusing on how grateful I was that it was *me* in pain and not one of my children, and since it was a uniquely female surgery, I thought of my daughter. I would chant this prayer: “Thank you God that this pain is mine and not Abbie’s.”

  • Hi Adrienne, I’m sorry, I could not use the “email me” link (didn’t connect to my gmail) but I really wanted to say hello because of your wonderful article in “Brain, Child” magazine. When I got to the paragraph where you say “It was hard, but…” I felt totally betrayed! Then realized you had to be kidding. Thankfully, the follow-up paragraph confirmed the thought! In any case, I have not experienced anything like what you described, still I was riveted by your story – and I wanted to applaud you for being so honest about such a personal story. It seems that your blogs are written with the same integrity, so I look forward to being a faithful reader. All best, Jayne

  • Meg

    We’ve had our share of horrific medical experiences as well. It’s sad. I’m glad you all are now getting good help.

  • when people ask how things are, do they TRULY want to know, and how do you begin to explain the onion of a story that has layer after frustrating layer? i felt like i was reading about myself. to suffer through so much wears on the mind and body of both the patient and the family. my heart goes out to you. in our own story, we’ve been to so many places you have. i’m so sorry for what you’ve been through. it sounds like you’re in good hands which is a blessing beyond blessings!
    susan crites
    http://www.susancrites.com

  • […] wall after another. It reminds me of being in the hospital after surgery, delirious from pain, and being told to stop crying. I need to know: where is the compassion? What has happened to our culture that we treat young, […]

  • “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.”

    I have very similar experiences. I’m 23 now but I’ve been a “sick kid” since I was 2 years old and had my first bout with asthma. Today I have asthma, environmental allergies, dehydration issues that often lead to migraines, an overdeveloped heart muscle causing high blood pressure, hypothyroid, depression (can you really blame me there?), newly-official Type II diabetes (both parents and all 4 grandparents had it and I’ve been borderline for 10 years), endometriosis (that was the worst one to fight getting a diagnosis for because one day I just had an intense 24/7 constant pain start with my ovulation…but I was already on birth control and myself and family history had heavy periods “normally”…dealt with a horrifying GYN who we had to report to the medical board and boatloads of GI docs before getting an amazing GYN/endo specialist in Boston).

    On top of that I have a generally bad immune system. Like, I’ve had mono three times because the dead virus in my blood stream (they live in there forever…how cool is that?!) pulled a Frankenstein’s monster. I’m deathly throat-closing-up with hives allergic to penicillin, but I take amoxicillin (same drug family…essentially penicillin with a garnish) just fine. My primary care doc wanted to do these specialized blood tests to figure out why my drug allergies were all over the map but insurance wouldn’t pay and I’m not about to spend $6k I don’t have when I can just tell the doc to confirm my crazy story with my pharmacist.

    I’ve also had my tonsils/adenoids and appendix/gall bladder out surgically removed. I passed every test as normal on the latter for a month. Despite the fact that I was throwing up water and living on Life Savers, no one would cut me without medical testing confirmation. It only got done because I was hospitalized for the dehydration for a second time and I convinced a surgeon to take my gall bladder and appendix out by crying, screaming, begging, offering a cash bribe, and saying I would sign a waiver not to sue him for anything he did to me under the knife. And? I was right. It was my gall bladder. Defective when they took it out. But he took my appendix too because I begged him. I really don’t want my spleen either (I feel like these “bonus” organs are waiting to betray me) but since my pain symptoms were only in the physical location of the gall bladder and appendix, that’s all he did.

    I can feel my internal organs. No one ever seems to believe me on this. Despite predicting the exact location of my endometriosis growths, that my gall bladder was broken, etc. And they never believe me about pain. My Mom is a nurse. She tells stories about how when I was in middle school I played an entire soccer game (injury was 10min in…I sat out for a few minutes then got back in) with three seriously broken toes on my kicking foot. Or how I cut my leg badly playing in the woods when I was 7yrs old and decided to clean and stitch it myself because I hate hospitals…and my Mom’s seen her neuro-surgery patients come in with much uglier scars. In fact, that one’s gone today while others “professionally” done earlier linger on. I don’t heal well and scar easily. I did my own stitches last year too when I accidentally stepped on an X-acto knife barefoot. You get the idea.

    I’d love to get genetic testing done if I can somehow ever afford it. My younger sister Sara has issues with endometriosis, migraines, and had to have her gall bladder out too. On top of that she has serious behavioral issues that warrant the label sociopath, and my bastard of a father had similar narcissism and violence issues but to a lesser degree. I just worry that if I am ever able to have kids, that I would pass on all these horrible things. I want to feel what it’s like to be pregnant, to carry a life inside me, and to give birth. It’s selfish. But if I knew in advance, I’d just adopt.

    I should stop rambling now. But if you ever need to vent or look for help about medical things, please ask, as my family has probably seen it all. 🙂

    I’m @molliekatie on the Twitters, by the way.

  • Oh and that feeling my internal organs thing? Really useful on predicting my rest-stop needs for long car rides. I can drink something now and tell you when I’ll need to pee it out. TMI…but this makes my friends (who I’ve known since middle school or earlier and who have been through it all with me) giggle.

    Right now I’m nursing a back injury, so I started blogging to try and fight my way through the depression.
    Mollie Katie recently posted..Her 15 Minutes Aren’t Up Yet REVIEW

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