The Silence Can be Deafening

I recently enjoyed a lunch with a childhood friend of mine. She and her husband have been trying on and off for a year. Like 99% of us, when they first began to TTC they had no problems disclosing this information to close friends. We've all been there; you talk about how great it would be to be pregnant at the same time, how your kids will grow up together... But when months turned into a year (or more) and that "close friend" is now 3 months pregnant and you're clearly not, everyone involved finds themselves walking on eggshells.

There seems to be three basic paths that people choose to take when dealing with their infertile friends/relatives: One is to morph into detectives, picking up on every little clue possible, but never openly addressing the issue. Another is to completely ignore that the infertility even exists and just further drive the "you must get pregnant soon" message. And lastly, the "I know you can't handle this, so I'll spare you" approach, making decisions on behalf of the infertiles. All of these, in their own way, are robbing the person/couple dealing with the infertility from finding their voice and their place as they steadfastly continue to hope that they will be parents someday.

Beyond the heartache, living with infertility means living with contradictory emotions. One part of us wants to keep all of this pain private while the other part just wants to let it all out. We remain silent through the most inane comments -- "Just relax!" "Go on vacation!" -- when all we want to do is snap back to tell those people that it's rather impossible to "relax" when countless strangers whose names you don't even know have seen the inside of your uterus. But no, we bear down and weather the insolence.

When we choose to remain silent, we find ourselves subjected to conspicuous analysis of our every move, looking for the tell-tale signs of pregnancy or lack-thereof. Those looks are not the most subtle (Hmmm, I wonder if she's going to order the sushi), or is it perhaps that we're also hyper-sensitive to the meaning behind our most mundane decisions -- to order a glass of wine or not. All a reminder that yes, indeed, you are still barren.

My friend was telling me that she wishes her pregnant friend would just check in with her and ask what's happening rather than trying to pick up on meaningless signs. That rather than assuming one thing or another about their pregnancy status, that she would just get the facts and let her be.

Putting myself in pregnant-friend's shoes, I can see how awkward this situation might be for her as well. If she asks about what the hold-up has been, then it might be an invasion of privacy. But not asking, as it turns out, can be even more disconcerting.

Then there are those who pretend like the infertility issue doesn't even exist and proceed to talk at length about so-and-so's pregnancy with their third child (for some strange reason, mothers tend to champion that approach). The assumption that of course you will also get pregnant in no time, so why beat around the bush. I remember while we had been trying for a year, someone decided to gift me hand-me-down baby stuff (crib, clothes, etc.), because after all, I will get pregnant tomorrow (or once I relax!). I felt like this move was a rude reminder of my infertility and not a generous donation to my future life with baby -- both parties, completely unable to relate to each other's messages. (I eventually donated all the stuff to goodwill. Couldn't stand having it in my house.)

On the other end of the spectrum, a fellow blogger recently tweeted about how upset she is over not being told about her SIL's upcoming baby shower. In this situation, the family clearly knows that this couple is dealing with infertility (openly discussed or not) and their solution to "deal with it" is to spare the infertile couple the agony of sitting through a baby shower.

I was viscerally brought back to how I felt during my years of infertility. While I had pulled away from life, friends and family, I also couldn't accept that I was viewed as weak and fragile. Other people's deafening silence and/or avoidance of our infertility made me feel even more pathetic. What?! They don't think I can handle a baby shower?! Oh, they have NO idea how tough I am! In truth, of course I couldn't. But when your life has spun out of control, you want to know that you are still capable of making your own decisions. That to go or not to go to a baby shower should be a decision you make for yourself and not one that's thrusted on you as though you're some kind of incompetent child.

To those friends and family who are unsure how to handle other's infertility, I would give the following advice: If you are close to the person, then when appropriate, sensitively broach the subject. If the infertile person wishes to talk about it, your role is to simply listen. Don't pretend to understand or say "I know how you feel" (unless you've been there). Simply offer your presence if and when needed. Sometimes, all we need is to have a shoulder to cry on. However, if you're not that close or should the infertile person choose not to discuss things, then don't try to read into their future actions. Let them live and cope the best way they know how.

Most importantly, don't make decisions on behalf of the infertile individual/couple. Deep down, you probably think that you're doing the most thoughtful thing possible, but it's only exacerbating the utter loneliness and chaos of the journey.

Infertility is a personal roller-coaster that one must feel allowed to ride. You don't know when the ups and downs are coming, but you anticipate. You didn't choose to get on that ride, but you need to be able to brace for impact and raise your arms in the air when you feel full of hope again. For those people in your lives who remain as spectators, watching you from the sidelines, it is your responsibility to give them a role or at the very least delineate the boundaries. The pendulum swings both ways. You bear a responsibility for how you wish to be treated. Speak up.

Jan 7, 2011 -- ETA: I came upon this wonderful entry by Jess over at "A little blog about the big infertility." She wrote an eloquent letter to her friends and family about the new path of embryo adoption she and her husband will be pursuing in 2011. She beautifully describes their wishes that they not tip-toe around them and let them make their own decisions about what they can or cannot handle. Her letter is a prime example of speaking out. I sincerely hope that her/their wishes will be answered in every way.

Dollars and Cents: Affording Infertility Treatments

I was contacted by a reader desperate for some information on affording infertility treatments. Considering the cost of treatments and everything that precedes and follows an actual IUI or IVF, I hope this entry will be helpful to many of you (who reside in the US).

Insurance Coverage/Plans:

First I want you to read your insurance plan very carefully. Unlike the owner's manual to your television, when it comes to your insurance plan, the fine print could give you the most important information regarding infertility coverage.

Find out if you live in an infertility treatment mandated state. For instance, New York provides mandated coverage for IUIs and medications. While Massachusetts residents will be also covered for IVF. Don't limit yourself to your state of residence -- if your employer is in a mandated state, they must offer infertility coverage (let's say you live in NY but work in Connecticut). Some insurers will cover at various percentages while others will give you a "lifetime" maximum amount of dollars to go towards your infertility treatments.

If you are lucky enough to have coverage, make sure there aren't any provisions and pre-requesits to the coverage. In some fashion, they will ask that you prove your infertility. (No, they do not read your blog, but they should.) Also, when you're gearing up for a cycle, make sure you check with your insurer to obtain a cycle number and that you have a letter confirming your coverage for that pending cycle.

Even if infertility treatments aren't covered, some tests (blood or surgical) are often times part of your basic coverage. So for instance, if your RE recommend a hysteroscopy but your insurer won't pay for it if it's done by a specialist, don't be afraid to seek the help of your gynecologist to perform the recommended procedures or tests.

If you're required to pay out-of-pocket to then get reimbursed by your insurer, you have to stay on top of it like your life depends on it (in this case, your wallet). Many insurers will deny claims, to eventually approve them after you've spent hours fighting about it. If you know your coverage inside out, you will be surprised at how much more you know than the representative on the phone. I've said this on countless occasions: you must be your strongest advocate.

With the upcoming changes in the Health Care Bill taking effect in 2014, you will no longer be denied insurance for preexisting conditions. But keep in mind that if  infertility coverage is part of your current plan, it will most likely be dropped by 2014. Universal health care may be coming at the cost of your infertility coverage.

Lastly, if your employer has not signed up to cover infertility, then pick up the phone and call HR. Make your case. Sixty five percent of employers who cover IF said they do so because their employees asked for it. So, petition your employer for IF coverage. Here's a sample letter.

Grants:

Some pro-bono agencies provide infertility coverage grants offered by Fertile Dreams, INCIID and the Cade Foundation. They come with strings attached and are incredibly selective (at times discriminating). But it's certainly worth the shot. Before you commit to any program, be mindful of the restrictions that are involved with pro-bono grants. Here's a link to important questions to ask when reviewing your grant options.

Shared-Risk Programs:

When you take into account the exorbitant cost of multiple rounds of IVF, some clinics and third-party companies are offering what they call "shared-risk programs" or package-deals. These programs cover multiple cycles with a money-back-guarantee if none of the cycles end in a live-birth. Expect to pay a larger sum upfront but you will have peace of mind knowing that you have 4-6 cycles before it all runs out. Depending on the plan offered, after 2 cycles, the consecutive cycles come to a fraction of the cost of just one cycle. Keep in mind though that these programs, similarly to grants, are very selective (FSH, age, past history and reasons for the infertility will be closely scrutinized). Also, they will not cover preliminary tests, medications and certain aspects of the cycle (like the anesthesia).

On a personal note, after paying for 4 IUI and 4 IVF cycles mostly out-of-pocket, we opted for a shared-risk program. The program initially rejected us but we pleaded our case via our new RE. They accepted us, we payed $30K. The first cycle with the program worked.

Other Options:

Medications -- All clinics have donated or left-over medications (injectables or otherwise). This is the time to work your people skills with your nurses. Also, when your RE calls in for your drugs, they often don't qualify whether they approve generic or brand name. Generic drugs are just as effective as brand names and cheaper.

Flexible-Spending Accounts -- Employers offer flexible spending accounts. Use them! If you know you're going to do a cycle (or more), a flexible spending account will allow you to put some of your hard earned pre-taxed money towards your treatments.

401(k) -- Some 401(k) plans allow you to dip into your savings for medical purposes without any tax penalties. This should be a last resort option as you are taking a great risk by dipping into your future for treatments that cannot guarantee success.

Clinical Trials -- Fertility clinics have on going clinical trials. Ask your RE if they are working on any trials that you may qualify for. Make sure you understand what's involved, what's covered and how beneficial it will be to you.

Create an Infertility Fund -- How many of us have received useless gifts for holidays and birthdays. If you have come out to your loved ones about your struggles, I would encourage you to open up an infertility fund. This is also the time to reach out to your community. You may be surprised by the outpouring of support. In the same spirit, contribute to your own fund by doing some spring cleaning. You must have countless things that are buried in the depths of your closet (or house) that you have not touched in ages. Put them up on eBay or do a yard sale.


Lastly, keep records of all of your infertility related expenses and all other medical expenses. If they add up to more than 7.5% of your adjusted gross income, you will receive tax benefits.

Holidays Are Not Easy, Even When You Have Candy

This morning, I kissed my husband goodbye and sent him on his way to work with a giant bowl of candy. I think he's going to be very popular today. But last night, we were not the popular ones. We didn't have any trick-or-treaters. Sifting through the mound of candy, picking out my favorites, it didn't take long to realize why not a single monster, princess or superhero stopped by.

When we moved to this charming town we had dreams of what life would be like. In part, we imagined little trick-or-treaters knocking on our door or us going around in our safe neighborhood with our kid(s) in tow. By the time summer turned into autumn and the leaves reached peak foliage, we'd already been through months of trying and three failed IUIs. I certainly was in no mood for Halloween and be reminded of what was already feeling out of reach. So, we kept our lights off and hid in another part of the house where we wouldn't be seen. They still came, still rang the doorbell...

Months turned into years and it wasn't until this year (now 5 years since we'd moved out of the city) that I finally felt like I could be part of the community. I made a trip to Target, got a few decorations to put on our door, a super-sized bag of candy and at last a bowl befitting of the celebration. I pictured opening the door. Handing out candy and my son getting to see all these kids dressed up, making him excited to become one of them next year. But instead, it was me and the candy (let's say the candy won and I'm not feeling so good today).

Even though I am finally on the other side, I was reminded of the scars of infertility. Some are buried deep within, some are visible ones from surgeries, but this one -- not having kids knock on our door on Halloween -- was a haunting reminder of how detached I had become from everything and everyone.

Along with the cold weather, the beautiful leaves and the seasonal festivities come the obvious presence of neighborhood kids and family gatherings. Halloween, Thanksgiving and the holidays make up probably one of the toughest few months for the infertile community. There really isn't a magic way to avoid being perpetually reminded of your crushed dreams.

I'm sure there will be lots of advice passed around on how to best handle these awkward and often times hurtful situations. I'm not sure I have the best advice considering. But what I can give you is a promise that I and the rest of the community will be at your finger tips (blog or twitter) for comfort.

Facebook and Why It's an Infertile's Worst Nightmare

I know I'm not alone when I thank the great minds that have allowed us to virtually connect with one another. I know many talk about "the good old days" but I can't imagine having to cope with infertility, which already drowns us in public silence, and not be able to share our fears and joys with a community of women/men who truly understand what we're going through.

Some of us connect in anonymity, via blogs, Twitter and even take that leap to become friends in real life. But the one virtual connector that seems to always come up in conversation is Facebook -- and not in a good way. Most of us are on it, willingly or by peer-pressure. The idea of reconnecting with long lost friends was certainly the appeal for me. But once infertility barged into my seemingly pleasant life, I started avoiding FB like the plague (although the sadistic side of me managed to drag me back to it too many times). Filled with pregnancy announcements, ultrasound pictures, and the latest "Oh Jr. just said the cutest thing today!" I cursed its dubious inventor.

What enraged me most was being surrounded by people who were over-sharing the lamest details of their lives, while I, who was actually experiencing something real, could not complete the "What's on your mind?" box honestly. I knew that if I did, it would either lead my so-called friends to stage an intervention or wonder if I had Tourettes. During those day, you had the option to "Dislike" something (Why did that ever go away?) and my little arrow had brushed over it many times. I knew I would probably get chastised for "disliking" an ultrasound picture, so instead, I would get online and within minutes have the support of countless people about the evils of Facebook.

Facebook seems to know so much about us and the various life stages we're experiencing -- "Boost your fertility in 60 seconds," "Go back to school mommies," "The best new sex-toys" (Not that I ever saw that one!) -- and yet, it's incapable of shielding us from the types of updates that would make us want to throw something at our beloved computers.

For all the filtering and customizing available, why can't we have a "Hide" button for that kind of news? And I don't know about you, but it seemed that other peoples' "baby news" always came at the worst possible time -- a "Sorry, not pregnant again. You looser" day, a "This cycle isn't going to work" mood day or a "My husband hates my guts for forcing him to have sex with me today" day.

I don't have hundreds of friends -- I never understand people who "friend" someone they've just met -- so during my pregnancy and my son's first year, I tried to stay away from anything that might hurt those I knew were coping with IF. Today, they are all either pregnant, expecting or parents. But every time I do post something, I take a second to remember how lucky I am that I can go on Facebook and not completely regret it.

UPDATE: Is the Washington Post reading my blog? I think so. I'm flattered, really.

Infertility on Reality Television: Giuliana & Bill

I never quite understood the whole reality TV craze. To me, it's like a watching a giant train wreck: it's horrible to see and yet you can't look away. Of course, being the jaded consumers that we are, we know that so-called reality shows are not truly real (unnecessary drama will be added to the mix to keep it all interesting). Especially those that involve pseudo celebrities making fools of themselves. Whether they "invite" us into their homes or show off a few dance moves, we enjoy watching them unravel. Behind the bleached-teeth smiles and meticulously managed personas, they are like just like us: flawed in every way.

So when the Giuliana and Bill show started (now in its third season), I seriously had not interested in watching yet another celebrity couple vanish into the failed-Hollywood-marriages-heaven (or hell). Giuliana DePandi, host of E! and "Apprentice" winner Bill Rancic brought in cameras to follow them as they learn the juggle their public careers, a young marriage, all while flying back and forth between LA and Chicago. Well, I wished them good luck and moved on. 

Then I started hearing about their struggles to conceive and finally saw them speak out about it on "The View" during a show dedicated to infertility. So much about that episode bothered me but I'm not going to go into details here. What stayed with me was Giuliana and Bill's appearance and their openness about their difficulty to conceive. I was pleasantly surprised to see them be so open about it and glad that they didn't shy away from pointing the finger at their fellow Hollywood crowd for creating the perception that one can conceive whenever, with whom ever -- Giuliana talked about feeling duped by it all. 

Again through the rumor-mill teasing this season of the show, I came to find out that they had made their first attempt at IVF and that they had experienced a miscarriage. That's when I finally set my DVR to record the show and observe how the process of IVF, early pregnancy and miscarriage would be handled on national television.

The first episode of this season was their first foray into the world of IVF. There were genuine moments of fear, love and pain. What hit home (as I'm sure it will for you as well) was the part when Giuliana and Bill were trying to figure out their schedule to start IVF, and Bill pointed out all the conflicts he had with his speaking engagements/appearances. Giuliana then confronted him and reminded him that they need to be in this together and that the success of cycle must come first. I saw that this couple was for real -- Bill explained himself (wanting to provide for his family) and cleared his schedule. You get a gold star, Bill.

As they started their cycle, there was the shock of the amount of medications (read, injections) involved with an IVF cycle. Unfortunately, you never saw them taking the shots, nor could you even fathom how many are involved to make a cycle move along. Then there was the egg retrieval and embryo transfers. Perhaps because of their celeb status or maybe they have an ultra-friendly RE, but all the kisses on the cheeks and the warm smiles and the extensive personal attention took away from the clinical and austereness of the IVF experience. Maybe I'm just jealous that the most I go from my REs were sympathetic smiles from across the desk during my WTF meetings. 

Watching the show kind of reminded me of TV shows that misrepresent the way some careers work in real life; like how advertising agencies or hospitals function. You get a taste for the drama of it all but if you're in that field, you shake your head and say, "That would never happen!" So I go back to my initial point, reality-TV is not real. It's dramatized, edited and simplified for the masses. While Giuliana and Bill Rancic teased the show by openly admitting their infertility, the show in the way it depicted an IVF cycle wasn't nearly as real as it should have been. Certainly this is not an IVF documentary but an entertainment show (it's on The Style Network!), but here's a chance to televise a young couples journey through infertility and the physical (and financial, for many of us) toll of IVF was treated like an underpaid extra. 

What was genuine and felt un-dramatized were the emotional reactions of the Rancics, especially Giuliana's. Her fears were very clear. After all it is her body that will experience the hormonal upheavals. She unabashedly craved the attention she deserved during her recovery period. As a couple, they had to come clean to their families (or at least to Giuliana's mom) about the cycle. And after the transfer, there was that naive hope that we all have experienced after our first foray into the world of A.R.T. -- what should we name the baby/babies? OMG, what if we have twins! Let's get a baby name book! Let's buy a house in the 'burbs.

What made the announcement of a positive pregnancy test most heart breaking is to know how this all ends for this young couple. Like a train wreck, it's awful and yet I can't look away.  

RESOLVE Peer-led Support Group - NY Area

As what feels like a natural progression of what this blog is intended to do, I have decided to volunteer my time to lead a RESOLVE support group. We will discuss general infertility issues, along with any specific topics that may be affecting you at the time.

The objective of the group is to get together with fellow women and men who are coping with infertility in complete anonymity. 

I want to encourage you to come to find strength and comfort in a safe environment where you will be free to talk about anything that's on your mind. 

This group will be in New York. Before I nail down specifics (meeting place and time), I would like to know how many of you would interested to join. 

I can lead the group in NYC (UWS) or in Westchester, depending on the need. So please, either comment here or feel free to shoot me an email (ebh824@gmail.com) and let me know your preferences. 

And please, help spread the word. 

Always Hope but Never Forget

In our shared journeys through infertility, most of us will experience loss. Loss comes in so many forms: loss of hope, loss of belief, loss of embryos, loss of a pregnancy, and worst of all, loss of a child. So today, on Pregnancy and Infant Loss Remembrance Day, I took a few moments to think of the three babies-to-be that I lost along the way. I thought of the months of treatment leading to each pregnancy, the ambivalent joy I felt at the news, and the ineffable sadness that stayed in my heart as I slowly picked up and dusted off "hope" from the rubble of my life.

When you're dealing with infertility, it feels like everyday is a loss remembrance day. But as we try to keep our chin up and fight through the pain, it's important to have a day when we can allow ourselves to feel again; to think of the what-ifs of pregnancies lost (and even cycles waisted).

Like the differences of our infertility paths, we have differences in our losses. We isolate ourselves and forget that there are countless others who are or have experienced a similar loss. The I Am The Face campaign is a visual reminder that we are one of thousands of individuals who share a pain that only those who have lost can really understand.

While the loss of my early pregnancies crushed me, I cannot even begin to imagine the loss of a late-term pregnancy and/or the loss of an infant. Once you feel that baby moving around and then actually hold him/her, a piece of you and of your heart must die with them. To look at my son today and imagine losing him at any point makes my heart ache. So when I look through the wall pictures on I Am The Face, I wonder what kind of pain is behind most of those smiling faces. I wonder how they experienced the loss. Where they are in their journeys. How they are remembering those little embryos/babies/infants.

If you're stopping by, I'd like to hear your stories of loss so I can think of you individually today.