Sunday, January 23, 2011

Everyone's a Critic

Before my daughter was born, I bought all kinds of books: infant development, breastfeeding, sleeping, etc. I pored over various titles online, reading through reviews and comments, and dog-eared pages for information I thought might be important.

And then she was born, and aside from the basic medical and developmental stuff, I rarely looked at any of them. Instead, I focused on getting to know her, and figuring out her cues so I could respond to them appropriately. All the books on sleep methods? Not nearly as helpful as paying attention to when she was getting tired versus overtired, and facilitating her in getting rest when she needed it. She naps well and naps regularly, she has a regular bedtime that evolved based on her signals, and she sleeps through the night in her crib. She loves her sleep, and thankfully for us, that’s always been part of her disposition.

With sleeping, feeding (I could write a whole post on the immense challenges of feeding this child), and other basic stuff, we figured out what worked for her and for us, and how we do things might not work for other families and other babies.

But with babies, sleeping and feeding are two of the most heated topics, and everyone has an opinion. From co-sleeping to cribs to bottles versus breast, the comments, opinions, and “advice” abound. Recently I read Natalie’s post where she reflected on the judgment/surprise people had when they heard about her particular sleeping arrangements. Her methods aren’t what would work for my family or my child, but they suit her baby’s needs and her needs as well.

As I read it, a post from Gluten-Free Girl and The Chef was still fresh in my mind. In it, Shauna discussed how critical we can be of one another’s food choices, how convinced we can become that our way is the right way, the only right way, instead of accepting that there are many, many “right” ways.

How many times have people told you what you should eat, or how you should cook it, or what you should avoid consuming? (Never mind what you should feed your kids!) I don’t mean the friendly advice we get, or the tips we get when we solicit help or feedback, but the unsolicited comments that really seem to imply we are doing something wrong by doing things a different way.

Sometimes when I read the comments section on online newspaper articles, or the back and forth on popular blogs, I am aghast at how judgmental people can be. Even the online reviews of the baby books I looked at were antagonistic, as if we are divided into non-attachment parenting types or attachments parenting types an never the two shall meet, as if breastfeeding versus formula feeding was somehow an indicator of maternal worth, as if how and where and for how long babies sleep is a measure of parenting success.

It boils down to lack of perspective, I think. Part of that is human nature and inevitable, but part of it is an unwillingness to see things from other points of view. In the spheres of chronic illness and infertility, lack of perspective and its close cousin, competitive suffering, are common:

People who don’t live with constant pain don’t always get why people living with pain can be unreliable, or doubt their pain altogether. People who are healthy don’t always understand how physically and emotionally draining chronic illness can be, and don’t think to check in on that. As a recent tragedy with someone I care about illustrated, people who do not look at life through the veil of depression might not see why things could look overwhelming to someone else.

We all judge sometimes…perhaps too quickly and easily.

People who have gone through multiple reproductive interventions might not have patience for people who think a few months is a long time to not get pregnant. People who are always in and out of hospitals might not see why a short hospital stay or simple procedure is a big deal to someone else.

We all compare sometimes …perhaps without considering that someone’s pain is big and real and present to them, and it does not matter what our own take on that pain is.

There is always someone convinced that if we eat this, or try this treatment, or follow this protocol, or read this one book, our problems will be solved.

We all think we have the answers sometimes…perhaps without considering that there really are many ways of doing things “right,” and what “right” constitutes varies so much depending on background, lifestyle, religion, family, etc.

The first time I had to supplement breast milk with formula was really hard—in my head, my body was letting me down, I was letting my baby down, and so forth. The amorphous “they,” the peanut gallery that dwells in the recesses of my brain, was working overtime. But as my husband pointed out, the most important thing was that my daughter was adequately fed so she could grow healthy and strong…and whatever combination of nursing, pumping, and supplementing that took was the “right” way for us to feed her. I think a lot of us can find similar parallels with this situation in the ways we negotiate and accommodate illness.

Sometimes the biggest challenge isn’t simply what others say, but having the confidence to carve out a different approach in spite of it.

Sunday, January 09, 2011

What's Guilt Got To Do With It?


How appropriate I am thinking about the prompt for the next edition of Patients for a Moment tonight, the night before my full-time academic schedule begins. (I’ve been part-time for weeks but that doesn’t make tomorrow feel any less significant.)

But that’s a whole different working mother post.

Guilt is one of the predominant emotions that accompany chronic illness. Certainly it waxes and wanes but it is inescapable. In my experience, it’s the ways in which illness impacts those around me that is the cause of much of my guilt, and from the patients I spoke to when I wrote Life Disrupted and the conversations we’ve had on this blog, I think that’s pretty universal.

There’s the guilt I feel when I have to cancel on friends yet again, or cannot be there for them when I’d like to, or need to rely on them for more help than I’d like. There’s the guilt during periods of particularly serious illness when it feels like things are so one-sided, and I am taking a lot and do not have a lot left to give.

I’ve written a lot about the guilt involved in marriages with chronic illness, and the toll invisible illnesses take on those who live with us and care for us. I am so grateful for all the ways in which my husbands supports me (physically, emotionally, etc) and all the compromises and accommodations he has made over the years because of my illnesses, but of course I wish he did not have to do those things.

When I was pregnant, I wrote about the anxiety that comes with a high-risk pregnancy, and the preemptive guilt I felt when I worried that something going on with my body would somehow harm my baby. Every non-stress test, every biophysical profile, every appointment and blood test and hospitalization was tinged with that, and literally not a day goes by where I am not grateful that she is here, and she is safe and happy.

But now that she is here and growing more alert and aware by the day, there is yet another permutation of guilt, because I am starting to see the ways in which my illness affects her. So far, the impact is minor, but I hate it when, for example, I am having my daily chest physiotherapy and she is in her bouncy chair next to me and needs me and I cannot give her what she wants. She doesn’t understand why, and I hope she is not confused as to why I leave her there. This is just one small example, and I know intellectually she is fine, but in the moment I hate it so much.

I am sure the older she gets the greater the stakes will be, and the things I might have to miss or might not be able to do are things she will notice even more. But I can’t worry about that now; that is not productive for me and it doesn’t do her any good. All I can do is give her my best on my good days and especially on the more difficult ones.

The closer we are to people and the more they mean to us, the more they shoulder when it comes to illness; the more our bodies' idiosyncrasies and problems become theirs. It is so easy to let guilt over illness consume us or overly define relationships and attitudes, but my health issues are but one part of me. Therefore, they are only a piece of the relationship I have with my daughter, with my husband, with my friends and family. If I remember that and keep things in perspective then that’s all the better for her.

(It only were it as easy as that, huh?)

Friday, January 07, 2011

So I Dumped My Daughter's Doctor

Ah, the doctor-patient relationship.

I explored it a lot in Life Disrupted, but it is frequent fodder for this blog, too: seeing doctors as our advocates, knowing the importance of speaking up, and realizing I can just say no, for example. I’ve compared finding the right doctor to dating, and will tell anyone who cares enough to listen how wonderful my lung doctor is.

All of this is to say, by now I know what to look for, and I know what I will and will not tolerate. And then I had a baby, and I became the mother of a patient, and became her voice when it comes to health problems and doctor appointments.

Before she arrived, I did my due diligence. I researched pediatricians, ran some interview questions by my best friend, who is a pediatric nurse practitioner. I liked this pediatrician’s experience, and when I met with him before my daughter’s birth, I liked his approach. Our talk went well, and I left feeling reassured she would be in good hands.

Since she had jaundice and had trouble feeding because of it, we saw him a lot her first couple of weeks. I appreciate his close monitoring of her bilirubin levels and getting us to a lactation consultant, but even in those first early days we began to see signs Things Weren’t Quite Right with this relationship. And as her first days turned into first few weeks and more health problems emerged for my little girl, the evidence mounted:

No appointment, from a jaundice check to her 2-month check up (shots included), lasted more than five minutes. Five minutes. I am not exaggerating. Just enough time to weigh her, give a cursory listen to her lungs, and answer the one question I managed to spit out in time with “yes” or “no.”

I would mention discomfiting symptoms to him and he would brush them aside (real, legitimate symptoms—I won’t get too specific here to respect my daughter’s privacy, but trust me, legit) or, dash off a prescription.

When I would call to discuss her lack of improvement and ask for advice, we didn’t get anywhere. No investigation into what else could be causing the problems, no wanting to examine her when her symptoms got even worse, nothing.

Never once did he engage with my daughter aside from the perfunctory weight check; never once did he ask me how she was doing (or sleeping, or eating, or interacting, etc). Never once did he ask me how I was doing as a first-time parent, or if I had any concerns, etc. Developmental milestones? What, are those something you’re supposed to discuss with your doctor, ever?

Lastly, he said family medical history wouldn’t matter for a long time and would not discuss it, (like, walked away when my husband tried to discuss it). Um, hello? My family’s medical history is as complicated and lengthy as my own, and given some of her symptoms, very relevant.

One day, as I was about to call his office because she had gotten much worse, I stopped mid-dial. I was sick of hitting the same brick wall, and fighting to get him to pay attention to my daughter’s symptoms. She deserved a lot more than that.

I’d wanted this to work out because I’d invested time and energy into selecting him, had really liked him during our interview, and I kept hoping the doctor I thought he was would show up. I gave him the benefit of the doubt at first because I was the new parent and he was the seasoned doctor, but I know my kid. And I know when Things Aren’t Quite Right with her.

She is the most precious thing in the world to me, and I entrusted him to do right by her. Enough.

So that same day, I called a different practice. They worked us in that afternoon. In fact, their words were, “An infant with XXX? Bring her in right away!” With those words, I officially dumped her former pediatrician.

Her new practice took down her medical history, her family’s history, spent a long time discussing various possibilities and plans of actions with me, and got her in for necessary testing the very next day. From day one they were proactive in getting her the help she needed, and have been wonderful about answering my questions, following up on her specialist consults, etc. Together, we’re getting to the bottom of a few different issues.

I have been angry with doctors many times before, but never as angry as I was with her former pediatrician when her new team figured out some of what’s wrong with her, things he would have and should have found if he’d cared enough to listen and know, do his job.

Rest assured she is a thriving, happy, smiley little baby but we are very, very lucky we did not have a much bigger crisis on our hands due to his apathy.

I am so grateful she has such amazing doctors working with us now, and that’s what is important. But I forgot how crummy it feels to be so disappointed in a doctor.

I have long said that communication is central to a good working relationship. Since I'm her advocate in the exam room, if I don’t feel I can speak with my daughter’s doctor about her health, then that is obviously not a tenable situation. I don’t need my hand held, I don’t need excessively long conversations, and I don’t call unless there is something significant going on, but I do need someone who listens, who asks appropriate questions, and who cares enough to look for answers.
Powered by blogger. Customized by PinkDezine.