Saturday, February 26, 2011

The Perils of Sharing

Sharing your fertility journey is a very personal decision. I know people who keep it all to themselves and a very select few, people whose families know but no one else, people (like me) who blab everywhere, and people who share but not specifics. It's a very personal decision that evolves over time. There is no right or wrong--but there are pluses and minuses for each way you can go.

Keeping it mostly to yourself can be isolating--you are going through this major ordeal and have to pretend like everything's ok. If you start dropping hints, like saying that you have a medical condition and leaving it at that, people will wonder but most won't pry past that. The deeper you get into infertility the harder it is to keep it a secret--the appointments expand exponentially, the physical toll on your body becomes apparent, your mood is a scary landscape that gets harder to paint over with rainbows and sunshine. You may have to go in for surgery or procedures and take a lot of time off work. But telling people at work is especially scary--who wants, especially in this economy, to give an employer heads up that you will hopefully be taking maternity leave soon? Not sharing means a sort of double life. The fertility-central life you lead in private, and the "hey, everything's fine" public life where people are constantly recommending vitamin C to you because of the excuses you give for not drinking at work or friend functions (lingering stomach bug, have a cold, on antibiotics, or the not-often-used-because-friends-will-suggest-AA "I can't think of drinking, boy was I trashed last night" excuse). People may say really insensitive things to you and not realize it's insensitive because they have no idea what you're going through -- a friend from yoga had someone bring in their baby to work, and while she was playing with the child they said, "See? Doesn't this make you WANT to have kids?" Ouch. It's exhausting to keep up with the not telling and not lose it on someone. But, it's also protective--you don't have people constantly asking you if you're pregnant yet, or when your test is, or whether you've considered surrogacy. (Thanks so much, Nicole Kidman, for bringing that front-and-center as now people think it is the next step if treatments aren't working out for you. Newsflash--surrogacy is difficult and prohibitively expensive for most normal people. Congratulations to you on your new baby, but oy.) You are isolated from the support people can give you, but you are also mostly isolated from the constant examination of your very personal journey.

On the other hand, if you are completely and totally open, as I have decided to be, it's not quite as freeing as it might seem. I don't have to live a double life. Someone asks why I'm not drinking and I'll say because I'm in the middle of a cycle. Most people I hang out with know and so I don't even have to mention it. Which is a relief. Sort of. The periphery people who know that I'm going through this journey but don't know the details can sometimes take me not drinking the wrong way--winks and raised eyebrows, like me not drinking is the equivalent of a joyous announcement. Nope, it's not. Telling people opens up a world of support that you didn't know was even possible--I have received notes and emails and messages of all kinds from people who I never knew would be so supportive and comforting during this time. People I haven't seen in years and years. People that I wasn't even super close with when I knew them back when. In a way, the more people that know are more people that can be thinking of you and sending you good energy. If I'm sad I don't necessarily have to explain it, because so many people know that I have the right to be sad. Having more people know what we are going through is great when we have good news, when we are ramping up for a new cycle, when we're reporting out developments in our treatment--but there is a flip side. More people knowing means that there are more people you have to tell when things don't go the way you'd hoped. It means that when you get a negative test, you have to repeat that news over. And over. And over. And it lasts for a really long time. Just this past week I went to get my hair cut and I forgot that I hadn't seen my hairstylist since before my last IVF cycle. In general most people talk to their hairstylists, and I am definitely no exception. She was super sweet about it, she didn't want to pry but asked how things were going, how they had turned out. I was a little caught off-guard because I thought my time of saying "No, nope, it didn't work out, AGAIN." was over. Now I had to sit there and explain that it didn't go well, that we had a very similar turnout from the last time despite a more aggressive protocol, and that we are doing another cycle but that it is getting harder to be optimistic. I love when people are interested--I can talk about it at length when someone seems genuinely interested in the topic. It makes me feel like less of a freakshow/sad sap when there is genuine interest. But I wasn't expecting to have this discussion a month later and while I am still so raw and to end up crying in the chair at Scott Miller. So, telling everyone can prolong your pain to an extent because you will always run into someone who knows what you are going through but not where you are, and it will catch you totally off guard and maybe send you into a new wave of deep blue funk.

The other thing about sharing is sharing at work. It is tricky, since you are always leaving for appointments and blood draws and you are hopped up on hormones and not acting like yourself, and you are sometimes just horribly withdrawn and teary. You don't want your coworkers to think that you are slowly losing your sanity. (You are, just for good reason.) You don't want people to start questioning your ability to do your job effectively. But you also don't want everyone to know at work. For me, work was the last to know because I needed it to be a place apart from all this. I needed to be able to compartmentalize. If you just suffered a loss and everyone at work is asking you "how are you?" it's very nice but it makes it extraordinarily difficult to keep it together and do your job. And when you work in a school, you have to be able to hold it together and you can't necessarily just take off early because you are emotionally spent. At least not all the time. But it's hard--people notice that you're not the same. People notice when you're out for days at a time for "medical procedures." People notice when you start gaining weight and in a school environment, if you got married recently and you're putting on a little weight around your middle people tend to think you're pregnant and waiting to announce. So is it better to keep it to yourself and endure the hinting questions so that work is a fertility-free zone, or is it better to spill the beans so that people don't ask you if you're pregnant or think you're a nutcase? Honestly, once you get deep into the meat of infertility treatments, there is no such thing as a fertility-free zone. For me it was easier just to tell the people I saw on a regular basis and tell school leadership on an as-needed basis. But I have to be specific--there are times when I just don't want to talk about it. And for the most part, everyone has been really great about understanding that. So should you tell people at work? It depends on what you need work to be. It depends on the people you work with. It depends on if you need to tell to protect yourself, or if you need to keep it secret to protect yourself. It is a really hard call to make.

Another thing I've found about sharing openly--you can fling that door wide open but getting it to close a bit is much, much harder. I've made the decision to share everything--to answer every question, to educate and hopefully help other people navigating through this swamp.  But that doesn't necessarily mean that I want to talk about it all the time. It also doesn't mean that I don't want to talk about it, either. For as much as I've opened myself up (and by proxy opened up Bryce), there are times when I just want to talk about anything else. And there are times when I need to hash it out, again. I am lucky to have great friends who are not afraid to ask me how to talk to me at any given moment. Because it's different all the time. I don't make it easy. Some days I can talk babies and nurseries and expecting people and hopeful stuff. And some days having children chattering in the background of a telephone call makes me incredibly sad. All I can do is say what I can and can't handle at that point in time. And make it clear--when I say I can handle something, I mean it. If I want to see a picture of your baby or look at children's books or see a cute baby bump, I will ask or do it when I'm ready. I will tell you. And I will need you to believe that I know what's best for me at that time.

For me, sharing is a way to connect with others--to get as much support as I can and educate people on what this process means physically and emotionally. It's a way to avoid having to make up excuses or add the stress of pretending to my already stressed existence. The sharing comes with parameters and I do my best to make it clear what I can and can't handle at any given time. It fluctuates. I found that it was harder to not share than to share openly, but that is not true for everyone. Everyone's journey is very different--work situations are different, family situations are different, and comfort levels with talking about the process at all are different. I think for me, the decision to be so open and take that openness with all its positives and negatives came with accepting that I was fully in this process and I would need a lot of support to get through. Accepting that IVF was our pathway and that it would not be easy and that likely I would not be a miracle story. I accepted the idea of sharing openly and I accept the consequences that go with it. And I thank you for being there, listening and sharing your own stories and offering advice and comfort and love. I am stronger because of it.

1 comment:

  1. Jess, it's always nice to read your blog. Sometimes the message isn't what we all want to hear, but it's good to hear it from you and have the opportunity to re-read it and the time to digest the sometimes complicated information.
    We love you both very much.

    Nancy and Rene.