Thursday, September 09, 2010

Biting My Tongue

You learn to bite your tongue when you live with illness.

After all, if you responded to each comment about how you’re too young/healthy-looking/productive, etc to be sick, you’d be on the defensive far too often. I feel like the “but you don’t look sick” phenomenon is well documented so I’m not going to drag it out further, but we’ve all been there. It’s part of life with invisible illness.

Living with rare diseases brings its own share of comments and misunderstandings, from medical professionals not recognizing your diseases at inopportune times to blanks stares and choruses of huh? when people ask about your condition.

When you live with infertility, you need to bite your tongue so hard it often feels like the sheer will power required to hold back is more than you can give. Or, you blog about the ridiculous comments and the emotional and physical turmoil anonymously. No, really. I don’t think it’s a coincidence that the majority of infertility blogs I’ve read are anonymous.

(Also not coincidental? The fact that I have never blogged about the daily grind of infertility, or the nitty-gritty specifics of our particular 4-year journey. It’s a choice we made together.)

Like chronic illness, infertility has its own set of predictable annoying comments, from the insipid, offensive “Maybe if you just relax!” to the dismissive “You can always adopt” (right, because that’s such an easy, offhanded decision for all parties involved, as I wrote about here). And these are the lesser offenses, trust me.

Not only are such comments trite and eye-roll inducing, they aren’t even logical. Right. If only we had thought to relax more. That would have solved the whole missing-cilia-in-the-reproductive-system issue precipitated by my lung disease. Heck, by that logic, if I’d booked a week or two in a tropical location or Canyon Ranch and really chilled out, maybe I could have even magically grown working cilia for my lungs, too.

The point of all of this is that combining infertility, chronic illness, rare diseases, and a high-risk pregnancy has been many wonderful, amazing things…and it’s also been an exercise in patience and self control.

I am fortunate to have a great maternal fetal medicine team and office staff who are very hands-on, supportive, and proactive. No one was that familiar with PCD, but they did their reading and extrapolated what has worked with cystic fibrosis pregnancies to tailor a plan of action for me.

When I need more emergent care than what I can get in the exam room, I am admitted to the labor and delivery floor, where an excellent staff handles pregnancy issues efficiently: women in labor, women with UTIs, women with blood pressure problems or other pregnancy-induced conditions, etc.

But handling rare diseases that require oxygen, x-rays, pulmonary consults, and assessments regarding oxygen thresholds for developing babies? That is when I don’t fit in. Some people like a challenge and dealing with novel situations; some prefer to stay in their comfort zone. Patients like me do not adhere to their comfort zones. It’s a simple fact of life with rare diseases and high-risk pregnancies.

We’ve actually heard them arguing about where I should go, with them wanting to send me to a medical floor better equipped to deal with my overall health conditions. Yet, I need fetal monitoring and the bigger issue is not my disease symptoms but how they impact my baby, which is why my doctor is adamant (and 100% correct) that I need to be on the labor and delivery floor. I try not to take it personally, but it isn’t the best feeling ever to hear people explaining why they’d rather not treat me and wishing I were someone else’s problem.

The only time I really took it personally, though, was when I was brought up for oxygen and fetal monitoring (baby was doing well, thankfully!) and my nurse that day decided to open the conversation with this gem:

“Did anyone tell you it would be adverse for you to be pregnant?” in a really judgmental, snotty tone. She could have started with “How are you feeling?” or “Hello, my name is X” or “How are your vitals?” or any number of things, but instead she made it clear to me she didn’t approve of my presence or my decisions.

I was livid.

I thought of the years (years!) we put into this decision—the consults, the second, third, fourth opinions, the sacrifices, the challenges, the support and encouragement we got from specialists, and even the rude, insensitive comments we got from others.

I thought of the baby thriving inside me at 32 weeks, a baby who measured ahead of the curve and looked good on the monitor even while I was truly struggling. Wasn’t her well being and health an indication our painstaking decision was sound? And wasn’t my nurse’s job to treat me, not denigrate my choices and make me feel terrible?

But it wasn’t the time to have a battle. I needed oxygen and peace, and my baby needed those things, too. “If they told me not to have a baby, I wouldn’t be pregnant. What they did tell me was that it would be high-risk and intense but that we would be able to manage it,” I told her calmly, biting my tongue.

The next time I was admitted I had a fabulous nurse, someone whose energy and enthusiasm instantly made me feel better. More than that, she was really interested in learning about PCD and my other conditions, and jumped on the computer to look information up and ask me questions. She thought it was cool to treat someone with a condition she’d never come across. She was funny, compassionate, and utterly proficient.

Out of nowhere, she turned to me and said, “I am really glad you are doing this.”

And in that moment I realized that comments and attitudes like hers transcend all the frustrating comments lobbed our way…and I was really grateful I ended up in her care that day. To her, I was a patient who needed treatment and to her, I fit in just fine.


Pamela said...

You are so right! I can't count how many times I've bitten my tongue to comments like, "If you were meant to have a baby you'd get pregnant, just believe." argh. Now, at just 7 weeks pregnant I'm glad I ignored them and followed my own journey. I look forward to going back in your blog & reading more of your journey, too :)

Medical Mojave said...

OMG. I want to do evil things to that nurse. How horrible.

I can understand when health care providers get burned out on people engaging in self destructive behavior (drug addiction and the like), people who won't help themselves.

But someone who has a job and a stable home environment etc... is not someone I would ever want to kick when they were down.

I bet that nurse pulls the legs off spiders as a hobby.

Glad you had some awesome nurses too. I had good nurses during my labor--I labored so long, they got to work with me multiple shifts.

Hang tough, momma.


Sarah S said...

Laurie thank you for sharing your ups and downs! I'm a patient in a medical system that includes a teaching hospital/medical school, and I find the same division of safe vs enthusiastic medical students to be very telling... I can't tell you how many medical students I've had take one look at my history, and have them recommend to the attending that I be sent to a different floor/specialist for something entirely not complicated that I'm there for that day. Then there's the students who ask a ton of questions about how I perceive my every-day-illnesses affect something as simple as an ear infection, strep throat, etc etc. Those are always fun; when medicine/healing/your health becomes a collaborative, proactive, and supportive experience for everyone involved, its always a nice feeling:-)

Never That Easy said...

Yeah, biting your tongue is one of those life skills I picked up early. Now I need to let it go a little bit, and speak up more. As always: it's about balance. Hope you're doing really well!

Rachel said...

Slowly learning to bite my own tongue... not so much with health care professionals but with other patients.

Meanwhile, in continued awe of your journey!!

Laurie said...

Great to hear your perspectives and experiences, everyone!

Rachel, I agree--sometimes it is VERY hard to bite the tongue with other patients, too! And Sarah, you are right, collaboration makes such a difference.

Congratulations on your pregnancy, PJ! May every day be as smooth and healthy as possible!

Sick Momma said...

While I think you hadn't that thoughtless, cruel comment from the nurse really well, I urge you to write a letter to the hospital about it.

It seems to me like it's a sign that at least some folks there need some sensitivity training.

My husband, who is exceedingly healthy, had to have two rounds of wrist surgery back in 2002. After the first, I got him home and he couldn't urinate and we ended up in the ER. So after the second surgery, when a nurse was trying to get him discharged rapidly, I insisted that I wouldn't take him home unless he was able to urinate. The incredibly snotty nurse made some cutting comments to me about needing to find better things to obsess over than my husband's bathroom habits and trust an adult to know whether or not he needed to pee. After pointing out that even a camel would need to pee after four bags of IV fluids, I demanded and got a supervisor, who suggested they use a really cool doohickey that could scan whether his bladder was full or not. Sure enough, his bladder was totally full and they used a catheter to empty it for him. (I still feel a little guilty over the catheter.)

I tried to hide my pleasure when the nasty nurse got her karma -- while hurrying Scott to get dressed so he could be discharged, he said he felt sick to his stomach. She handed him a small plastic garbage bag without even opening it for him, but he projectile vomited all over her before he could get it open and to his mouth. ;-) I filed a complaint with the hospital about her because although it was one thing to be snarky and insulting to *me*, I was furious that she yelled at him for throwing up, like he'd done it on purpose. Yes, it's pretty yucky to deal with vomit, but aren't nurses supposed to be trained to deal with gross bodily fluids and things like vomit?!

Anyway, I'm glad you've had some awesome nurses too!


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