Privacy Matters

Lately, in publicizing my fertility coaching services, I distributed about 2,000 postcards printed with details of my private and group sessions to women living and working locally.  I was struck by how many people were hesitant to pass along the information I offered to someone they knew who might need it.  I heard nervous giggles, noted averted eyes, pained expressions and got some apologies.  Only 1 person was hostile, thank God, and I stared her down. Am I naive in thinking that infertility is now such a pervasive condition that there is no social taboo, stigma or shame attached to it?

I admit that after my first miscarriage, nearly 13 years ago, I swore my mother to secrecy in regard to subsequent pregnancies until after we had passed into the second trimester. It wasn't a taboo or superstition; I just didn't want to be subjected to well-meaning expressions of sympathy, stories of others who miscarried or failed to conceive, opinions about the merits of adoption or even worse, hurtful comments about the miscarriage being "for the best, "God's will," "a one-time thing" or "at least it wasn't really a baby yet." My emotions were so close to the surface that I thought I might break down if someone mentioned the loss directly to me. My motivation was the avoidance of a negative consequence. Instead, I experienced a deep sense of loneliness and low self-esteem during those years, and that was negative too.

Everyone sets privacy boundaries, whether they are conscious of them or not. There are subjects we won't discuss with anyone and those we will only discuss with intimate friends, our families or our doctors.  There are privacy boundaries within these groups too. Which family members, which friends and which doctors get the full story? That might leave out "work friends." It's an issue of trust.

Keeping secrets arises from fear. You may fear that talking about it makes it seem more real. It could be fear of judgement. Fear of losing the person to whom you tell your secret. It may be the fear of finding yourself the subject of gossip. There are endless reasons. If one person said something cruel or stupid that set you off, you will want to avoid it happening again. Unless you shut yourself in a room and don't cross paths with other people, you are bound to have your secrecy, and your reasons for it, tested. You can learn to put that person in her place, and feel stronger for it, rather than slinking off to a dark corner for a cry.

If you or your partner is infertile, consider how much your privacy is worth. If you and your partner have adopted a strict, sealed-lips policy, consider the consequences. If no one knows your status, you will continue to be invited to baby showers, shopping trips for your mom-friends, family get-togethers and 1st birthday parties. Stay away, without a good explanation, and you risk hurting your friends. Attend and be subjected to comments, like "you'll be next," or "the two of you had better get busy."  No one will know enough to be sensitive to your feelings when the conversation turns to kids.  Do you smile back, but say nothing, swiftly change the subject or give them a withering glare?

It can be helpful to mentally construct scenarios that test your boundaries.  Think about someone else you know, who is suffering from a strange rash, permanently bad breath, excessive gas or toenail fungus.  You have guessed, or speculated with friends about it but she's never said a word. If you heard of a remedy or a doctor who could treat their condition and alleviate their symptoms, would you find a way to pass on that information, or tell yourself that they will discover it on their own, in time? What kind of excuses do you give yourself for keeping it to yourself?  Is it that the conversation would be:

• awkward for you;
• embarrassing to them;
• an invasion of their privacy;or
• none of your business?

Would the same reasons apply to a situation that has more permanent consequences; such as a strangely shaped mole on their back that could be skin cancer, evidence of self-harming or their hand shaking noticeablywhen they reach for their tea cup?  Could you bring yourself to mention it to them, would you refer indirectly to the evidence, or keep entirely quiet?

From a very young age, we are conditioned by our parents, culture and immediate community as to how we treat personal information, how and what we communicate.  As an adult we make our own decisions, using a wider range of criteria than we were taught. In regard to health matters, you may  consider your relationship with the person, the seriousness of the condition and the risk of an unexpected response.   How well do you know them?  What will you risk losing if they react badly to your message?  What do they risk losing by not giving you room to open this type of discussion?  What could they gain if they allowed people in a bit more?

Now, turn the tables on yourself. What level of privacy do you expect? Would you be angry if someone brought it up?  Ask yourself what is behind your need for strict privacy... a taboo on what you may deem an "intimate" topic, or a closed circle of trusted friends that doesn't include them. Is it culturally prohibited to discuss matters to do with marriage, or the body? Would it matter whether the topic was a hair sprouting on your chin (I would want to know!) or infertility? What fears do you have around discussing this subject? That it would be widely discussed in your absence? People will speculate about the problem, judge you as unfit, blame one of you, leave you out of family get-togethers, criticize your lifestyle...

All of your feelings are valid, for you.  Remember; people are a sum of their parts to a large extent. Everything you have experienced in your life adds up to your beliefs and attitudes today. It's the same for the other person. However, you can win someone's empathy or consciously influence a change of belief and attitude, by choosing to be open. If you are going to go the route of strict privacy, explore the risks involved in maintaining that stance. What could you have learned from a person you shut out?  Could you have heard just the right combination of words, tone and emotional expression to cut through your pain and move you forward?  Might you have been introduced to another couple going through very similar experiences? If you are open with close friends and family, but no one else, are you choking them in their desire to find help for you, learn more about your condition and release their feelings to someone who can help them? 

An online forum, an exchange of Tweets, a Facebook page and an infertility blog can all be turned off, temporarily or permanently, if you have had enough.  It's true that family, friends, neighbours and colleagues aren't quite that easy to push away once they have a foot in the door.  However, opening that door just a little doesn't mean you have to spill your guts, cry in front of them, or allow that conversation on a regular basis, or in public.  It's your infertility. You have the right to set boundaries, but I caution against building the fence too high to look over the top.

If you are the person who said "Oh, I couldn't. No." when I asked you to pass my card to the person you know or suspect is infertile, I say "take that risk." Show that person that you balanced the risk of receiving their anger against the possibility that I, or another fertility advocate, could help them in some way, and came out in favour of caring for them.  If you are afraid you will put your foot in your mouth and feel foolish, balance the risk of feeling foolish against the good you can do. If you do decide to speak up, or merely slip a card into someone's handbag, be ready to give an explanation for your action. Summon up your courage. Practice ahead of time, take advice and consider your timing. If your instinct was that the infertile person protected their privacy, don't add insult to injury by speaking to them in front of others.  Respect, sensitivity and truth will get you both through it.

Comments

[Mrs.Tiye]

Oh my goodness this is amazing. And so beautifully articulates what I've been trying to tell people! Love it, passing it on!

[Lisa]

Hello Mrs. Tiye,

Thank you for such an enthusiastic comment.  I get few comments on these posts, so I appreciate the people who do comment, all the more. Perhaps you could Re-Tweet the link to this post if you are on Twitter.

Have a great day.

[Gene Marsh]

Hi Bunny:

You should have a literary agent. Your comments and insights are brilliant and should be shared with a wide audience.

[Nic]

Wow, what a great post. Thank you for visiting my blog and giving me this link.
I keep IF private due to a number of reasons, poss all you have listed above! Its none of yoru buisiness, fear, do not want to continuously talk about it, do not want to hear all the usual cliches e.g. ' if you just relax' etc.
I have opened up to a couple of friends and that has helped a litte. DH's parents and grandparents vaguely know we have IF issues, how ever that does not stop them keep usking us when we are going to have kids. If people that know can be so insensitive, then there is no point telling everyone else as the insensitivity will continue regardless.
I am not telling people that we are going through IVF other than 2 close friends. This is mainly because I do not want people keep asking questions, staring at my belly expectantly, I do not want to dissapoint everyone if I do not get pregnant. I can not cope with everyone else's pain when I will be dealing with mine and DH's.
People are work are already speculating though, one person actully mentioned to someone else that they think I am going through IVF. How the hell do they know? I have only just found out and got my dates. dont even start until July!
Privacy makes it easier, I think.....
Sorry, did not mean to leave such a massive comment!
Thanks
Nic

[Lisa]

Hi Nic,

I understand all of your reasons, and with some people, privacy does make it easier. However, with other people, like your in-laws, who feel they can ask anything, someone has to risk some uncomfortable feelings and lay down the law. If you don't want to be the "bad guy," then by all means make your husband do it. They're his parents and grandparents and presumably, they will love him no matter what he says or does. Something really simple can do the trick:

"We really want to have a baby and we're having more difficulty than we expected. It makes it even more difficult if people keep asking us how it's going. Please stop bringing it up. You will be one of the first to know any good news."

It works, because it appears that you are opening up just enough and including them, then asking for privacy.

I bet you can't wait until July! Keep in touch, and let me know how it's going. Lisa