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Dealing With The Clueless

They're out there. We've all run into them. Once we tell them about our child's diagnosis, there's no telling what's going to come out of their mouths. They're...The Clueless!

Who are the Clueless?

Let's face it: when it comes to death, we're all clueless. What sets the Clueless apart from the rest of normal society is that in the face of your pain, they cannot empathize. They minimize the loss or impending loss, they tell you your baby isn't human (bad science, there) and it's better she die now than later (I ask for proof on this one) and find many platitudes which they will treat as painkillers ("God needed another angel.") Many good-hearted people will say something dumb, and anyone who is sensitive will feel as if she has said something dumb, but you'll hear past the fumbling words to the heart. The defining factor of the Clueless is that they have no heart behind the words. In other words, if you think you're Clueless, you probably aren't.

Doctors

Acquiring a medical degree doesn't make you correct. I'd like to point out right at the start that I've lost a tremendous amount of respect for doctors and nurses after seeing the way my grandmothers were treated during their dying illnesses. At least one of those doctors should have been arraigned on murder charges. While the care I received during Emily's pregnancy was stellar, I believe it was that I was seeing midwives and not doctors.

However, we're stuck with bodies that get sick from time to time, and that means we need to deal with medical professionals. Many doctors coerce their patients into a termination they don't want and don't need. That might be easier for the doctors, and it might also be that when faced with a situation like ours, they feel they have to do something. I've heard of doctors who lied to their patients or insulted them because they were carrying to term. So be it. Find a different doctor. You can search online for a doctor near you with One More Soul, The American Association Of Pro-Life Obstetricians and Gynecologists, and Pro-Life Maternal-Fetal Medicine.

It's not always possible. I know on my old health insurance plan, our choice of OBs consisted of precisely one practice. I changed health plans in order to escape that cattle car! If you have an option, do everything in your power to find a supportive professional to take you through the next few months. A doctor or midwife you trust is very important during birth; I've experienced both extremes. I don't say the doctor necessarily has to be caring, but that would help too; I'd rather have a doctor I trusted who didn't care than one who cared but who I thought might try to "look out for my best interests" by manipulating me.

Looking at it from a doctor's perspective, it must be disheartening. All those years of medical school and residency, study and hard work, and your doctor can do nothing to solve your problem. It must be a helpless feeling, and doctors are unused to feeling helpless. Many doctors try to escape that feeling by writing you an antidepressant prescription. All that education, and it's all they can do. Accept the gesture for what it is. At least in that situation, you know the doctor cares.

Your best protection against your own doctor is information. Learn as much as possible about your child's problems and network with other mothers and fathers whose children were affected. Get a second opinion. Ask questions whenever you feel something might not be right. But above all, don't stay with a doctor who belittles you and your informed choices. After all, doesn't being "pro-choice" mean that your doctor has to respect your informed choice as much as a choice to terminate?

A word of caution...

A nurse has written me to say that she didn't know any better when she started her nursing career. In some cases, cluelessness and insensitivity may be due to inexperience and hospital policy. The feeling will be the same as far as you're concerned. You're the victim--your job shouldn't be to educate. But if you have the strength to educate your doctor or nurses, more power to you. Your insensitive health-care practitioner might be the next hall-of-famer, if only he has the courage to really listen to you, and the personal strength to change his attitude.

If you are a medical professional who wants to learn more about support after infant loss, I highly recommend "A Caregiver's Guide To Perinatal Loss" and Limbo & Wheeler's "When A Baby Dies." Both have good and compassionate suggestions of things to say, do, and avoid. In many cases, it's the gestures that matter most to the patients (such as booking the six-week postpartum checkup for a time when no pregnant women will be in the waiting room.)

Strangers

This is the easiest bunch of Clueless people to deal with. Most of them simply don't need to know your baby's diagnosis. Some of them will need to be told, like the dental hygienist who won't shut up about how much joy you'll have with your little one. Those are easy ones to silence simply by shocking them ("I'm sure that's true. Too bad she's going to die") or telling them, "I'd like to change the subject, please" or even "Please, stop talking. Now."

Mildly tougher are the Clueless strangers who aren't really strangers because you have to see them on a regular basis. The children's librarian, the greeters at church, the receptionist in an office you visit frequently, that guy who always is mowing his lawn when you go for a walk... These are people who don't know you and are most apt to throw cliches your way. In most cases it's probably better to just grin and take the dumb things they say because they don't mean it anyhow.

Acquaintances

Sometimes these people will surprise you. They know you're pregnant and will naturally ask all those pregnancy-questions. They'll find out afterward when they see you without a baby. But they don't know what to say. The response I find most memorable was from one woman I'd figured I wouldn't tell at all. One day she started raging about the unfairness of the world and started telling me about a show she saw where a woman was having a wanted baby and it had no brain! I said, "Oh, anencephaly. That's what Emily has." This woman just gaped at me for a very long moment. Then she asked a couple of polite questions, like was I sure. (As if I'd have just guessed at something like this.) At which point she went right back to prattling about her own problems.

The trouble was, I needed to deal with her a few times a week. I could see she really wanted to ask why I wasn't getting rid of the baby--but something kept her from doing it. I guess because I'd talked to her before about Emily and she knew how much I loved her just from that.

Which brings me to the methods I came up with to stop the Clueless from hitting me when I was down...

Mention Your Child's Name

This is the easiest way to do it. When talking about the baby, if you know the gender, use it; if you have picked out a name, use it. The woman who sniped at me, "When will it all be over with?" couldn't keep up that nasty tone when I replied, "Emily's due date is July 3rd." It's refreshing in a way to reply calmly when they ask something particularly rude. "Why aren't you terminating it?" "You mean why aren't I terminating Emily?" It gets the point across.

Being Philosophical

This worked with other people. When I visited the maternity unit ahead of time to ask some questions, the nurse at the desk asked why I was waiting so long to deliver. I said in a very even tone of voice that I probably had 60 more years to live; Emily had four months. Four months wasn't a very long time, considering. She softened up after that.

Lying

Not recommended, but I used this tactic once. A woman I knew from a community organization (and saw a several times a year) said, "And do you have to carry the baby to term?" I said, "Yes," quite honestly, since to be true to myself, I had to carry Emily to term. I just didn't mean it the way she meant it. It ended the conversation, at least until next time.

Being Silent

There's nothing more menacing than a clearly enraged person who is saying nothing. It's a not-saying that gives the impression of a person coldly burning with fury. If you can pull it off, it works on the worst offenders. Make sure to keep your jaw clenched and a level stare on the individual.

Friends

Your friendships are going to change over this. Some will deepen and some will disintegrate. If it's strong friendship, it stays strong. Then you know you can count on each other no matter what. If you find a friendship dissolving, it's not necessarily because of your friends; in part it will be that your understanding and your world-view will change as a result of your child's life, and the person who emerges might have different priorities.

I dropped only one friend because of Emily, and that was a friendship destined for ruin anyhow. This person's longstanding selfish behavior came to a head, and I couldn't condone it any longer. Three months after Emily's death, another friend (whom I had presumed to be a close friend) dropped me. That hurt a lot, and it made me wonder who was next. It's double-jeopardy, being punished twice for the same "crime." First reality punishes you. Then some friends punish you again. I got through that by counting how many friends had been so awesome to me in the past six months. Logically, we're better off without friends who are friends of convenience, seeking our company only when we have shining smiley faces. Emotionally, it always hurts to be written off by a friend. No tips here. I'm not sure what to do myself.

The majority of my friends pulled low-level avoidance tactics on me because they didn't know what to say. I had to seek them out and show them I wasn't scary. Some talked with me about everything but Emily. I found that they followed my cue for the most part, though. If I showed them I could talk about Emily without breaking into hysterical fits, they relaxed. If I used her name, they used her name. If I indicated that I needed to talk, they'd listen. (I have one friend who would be stunned to know how horrified she looks every time I mention one of my "aberrant behaviors," like visiting the cemetery or remembering my daughter with love. She never says anything about it, but her face telegraphs the tension...or is it fear?)

If you find your friends are distant, they may be following your lead. They may not want to "remind" you, as if you could forget you were pregnant ("Oh! So that's why I'm wearing these funny clothes!") They don't want you to suffer; they don't want to see you suffering when they know there's nothing they can do about it. So let them know what you want. When they screw up, try to be charitable and keep a good sense of humor. They don't know what to do any more than you do. This will only get worse after the baby's death.

Family

Family can either be a blessing or a curse. They have the same problems relating to you that friends have, with the downside that you're stuck with them. You can't just cut off your selfish old Aunt Magda who tells you that it's better your baby be dead, though you'd like to. Family members also know you for a long time in most cases, so they assume they know what you're going through and what it is you need or want to hear. They'll share a lot more willingly from their store of philosophical knowledge. They want to protect you. You'll need to be more charitable than with your friends, but do try to keep things steady with your family.

Stupid Things People Say

People used to give me just the dumbest advice when I had my first child. Like the guy on the airplane who suggested that I clap my hand over my son's nose and mouth for about a minute to forcibly pop his ears. Right. My grandmother had a reply which has served me well, so I pass it along. Ready?

"That's certainly something to think about."

Not that you're going to do anything about it. Not that the stupid statement had merit. As a reply, it's totally neutral-sounding, so the Clueless Individual will walk away happy to know she has solved every problem in your life. Other neutral statements I came up with were "I'll remember that," "I wonder what my doctor would say about that," and "I'll have to tell my husband about it." I think of it as a kind way to tell them off.

Phones

I pass this tip along in case anyone might find it helpful: "If someone is being Clueless over the phone, the way to hang up on the person is to hang up *on yourself* while you're speaking. If you hang up on yourself mid-sentence, then take the phone off the hook, it'll seem like you got randomly disconnected, and you can take a breather until you're calm before speaking to the person. It's not a solution, just a mechanism for cooling-down."

In response to the above, Dana writes, It's a white lie, but if there's someone whom you speak with frequently and frequently would like to just hang up on, tell them that you got a beep, your call waiting is messed up and you'll call them back if you get disconnected.  Then you can call them when you're ready to deal with them again."

Dana is more technologically advanced than I am: I don't have call-waiting. <g> This sounds as if it will buy you more time than just the hang-up.

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