Sunday, June 15, 2008

The ignorance of Infertility.

I mentioned it below that my RE told me to come back when I was ~really~ pregnant so they could "point and laugh" at my belly. I immediately responded with "there is no way I would walk past all of the if women in the waiting room with a belly". To this he said "Oh, they don't mind!"

Well, the conversation went on a little bit longer ... there was the Nurse, RE and me in the room.

RE: "If anything, you bring them hope!"
Nurse: nodding in agreement.
Me: "Do you think we (the if-ers) actually think there are no success stories? That we are all just coming in and paying tens of thousands of dollars for something that never works?"
Nurse: "But seeing you really will really hit it home that WE can go this!"
Me: "Um, Have either of you been an infertile woman?"
Nurse/RE: staring at me.
Me: "Well, I have and it's hard. Even when we have children already. To watch someone with children come into the waiting room is a stab in the heart. But what's worse it to see someone who has recently succeeded in there. The woman holding her ultrasound showing the front desk. The woman coming in with a belly. It's all too fresh. To me, it's harder than seeing children here, which I actually wish I didn't have to see."
RE: "Well, I still think you showing up with a big belly would make all the women in the waiting room feel full of hope."
Nurse: "Yeah."
Me: "How bout them Celtics?"

Wow. I can't believe the staff doesn't understand the feelings of an infertile. I'm not surprised when people don't understand secondary infertility, as not many people do, but primary? They really thought that seeing me full of baby would bring a woman on her 4th IVF cycle ~hope~?

I can't tell you how disappointing it was to discover this. And explains why they have a section of their waiting room filled with toys and children's books. While occupying children in a waiting room is a good idea, having a section like this is giving the green light for parents to bring their children into an RE appointment. It just hits home that unless you have personally gone through infertility, you really may not "get it". Even an RE's office itself. Sure, non-ifers CAN have sympathy for an infertile, but there is just no way they will understand all the facets of infertility with society's current perceptions.

I'm sure by now you have all read PJ's article in the New York Times. And while the ignorant comments made my blood boil, it simply didn't surprise me. Infertility just has ~not~ been in the public eye for long enough yet. The public needs education and thankfully, it's starting. But I know we're not going to get people to understand unless we continue to try to explain things to them.

When we hear a naive response/question/comment, we need to take time to educate. Don't shrug off someone's ignorance. Teach them. Sure, the comments usually take us by surprise and hits our heart strings. But use that emotion in a constructive way. If a friend tries to support you when you are bummed out over a failed cycle and they say "Well, there is always next month!" or "Trying is the fun part!" or "It'll happen when the time is right.", take a moment to explain how much infertility takes out of you. Keep it simple if you'd like or sit her down and take 20 minutes.

But don't keep quiet.

If you take a moment to explain how all encompassing infertility really is. And while you know there is next month, you are in pain right now. Explain the appropriate response is "I'm sorry". If you do this, you may be helping each and every infertile woman your friend may come in contact with in the future. While your friend may not suddenly get all the ins and outs of the psychology on infertility, the next IFer with a failed cycle she talks to will get an "I'm sorry" in response. What a great first step to understanding.

Think of how long it took people to understand HIV/AIDS. Parents used to pull their children out of school if there was an HIV positive child in the school. They thought sharing a lunch table was putting their children at risk. And through years and years of education, most people understand the disease. Sure, there are a lot of ignorant people out in the world, but it's getting better. And people's response to Infertility will get better to. We all have to do our part though.

I'm disappointed I gave up so easily with my RE and nurse. To help them understand, I'm going to write a letter explaining it a bit more. It may not change their minds, but it'll start their inner dialog. It's the best I can hope for.

Will you help? Will you take a moment to explain this to the next person who may say the wrong thing? You may not get a great response when you do this. Usually the person you have to explain this to had good intentions. And when people who were just trying to help get negative feedback, they naturally get defensive. I try to alleviate this reaction by saying "I know you mean well and I appreciate it more than you know, but I would like to explain ... " And of course, end with thanking them for taking the time to talk about something that's a little uncomfortable. Acknowledging you know their intentions were nothing but good really helps.

I've had some friends who have really surprised me and some who have disappointed. One friend, Trisha, acknowledged she didn't understand infertility and she actually went out of her way to educate herself. She researched it and even read an entire book! All just to be able to "correctly" support the very few infertiles she knew. You couldn't ask for a better reaction. On the other hand, I've been completely shocked by other's reactions when I tried to talk to them about their comments about infertility. I personally think the bad sometimes comes with the good and you just can't escape it. But I would rather have 9 outcomes and 1 bad one instead of not saying anything to all 10 people.

This is now getting in the "too long" category and I'll wrap it up. I just hope I've shown how just a little explanation from all of us can really go a long way. It'll take some time. It'll take some work. But we can do it.


bleu said...

I have always been an outspoken sort of person. I am also an educator so I have spent many hours educating others on this. The sad truth is though, I have had many who just weren't interested in "getting it" and who got to a point where they felt it was "work" to talk to me.
Or they ended up at the place of saying "why put yourself through it, be happy with what you have" and then from there it just sort of does the slowly fading friendship dance.

After you look around and you have like 3 people anymore you see or talk to at any regular rate you begin to not speak out quite as much. You become even more of a hermit.

For me, that is where I have gotten to after 3 years of IF.

Jewels said...

I feel frustrated with your RE, and I’m sure many are that way.
I get what they are saying, but what they don’t understand is when I get hope, it hurts. Its not like I’m just starting out and it feels good to have hope, hope becomes the enemy, how many times did I try something, see someone else try it, them get their BFP, Me gain Tons of hope, only to get a BFN, I feel even more of a loser. It makes me wished I never even talked with them. I get over it, and I kept trying, and yeah, I got it, but does My BFP, Your BFP, everyone who got a BFP since January give the girls who haven’t got theirs Hope? Probably, yeah! And I’ll bet its kicking their asses too. I’ll bet their hearts are breaking. And it breaks my heart.
(Ok, there is my emotional rant, the opinion expressed here is that of a hormonal crazy lady)
But yes, you have me to at least commit to giving that explanation to the next person, put I cant promise the next after that, I may just dig their eyes out instead. ;)

Deb said...

Nancy I am not an IFer and I completely understand what you are saying. I do have sympathy, but your right. I will never know what you and the thousands of ladies like you go through every day. I commented on a blog some time back (when I first began this blog experience) that I TRULY and HONESTLY (perhaps stupidly) had no idea how serious a problem infertility was. I lived in my perfect little "I'm ready to get pregnant so I will world" and thought every one else lived there too. I was so naive.
Me heart goes out to each of you for all the pain and heartache you go through. And to all of you:

I am sorry.

jenn said...

I try to explain everytime I encounter these comments, but for me it often turns into a very emotional rant. Most anyone who maks these comments to me is a friend who knows what we are going through, which makes it easier to explain, but harder at the same time. It would be easier in some ways to explain to a relative stranger - I could do it without all the emotional involvement that comes with an insensitive comment from a friend.

BethH6703 said...

Thank you - for this post, for NOT going in to your RE's office with a 30 week belly, for attempting to open an honest dialogue with them, and with people here on your blog.

You're right, the only way this will get better is if those of us living with it find ways to open up about it in real life. Talking to each other via the blogosphere is wonderful, but it doesn't open the issue up to the outside world.

2 things, and then I'll shoosh:

First, I HATED seeing pg women & kids @ my RE's office. Yet, I LOVED looking at the wall of pictures of babies that they helped to bring into the world. Testament to their success, "proof" that their patients DO get thru to the other side, and yet reserved enough that nobody has to have it shoved down their throat. Perhaps an idea for your RE?

Second, the best comment I ever got from a non-IFer friend: "I may not understand this, but I know you, and I love you, and I want to help you however I can". Since then, I've been able to talk to her about procedures & drugs & the emotional roller coaster. She fully admits not knowing the technical side of it, but she is ALWAYS willing to listen, and is ALWAYS supportive of ME. What more can a girl ask for from someone that "doesn't get it"?

MrsSpock said...

I've been out of the closet with my IF issues from day 1 for all the reasons you cited. People will never learn if we are secretive. It ticks me off that after all the RE has surely seen, he can still be in the dark about our feelings. It always filled me with pain that my RE shared a waiting area with an OB, and children, babies, and big bellies were par for the course at appointments.

Kim said...

I agree, we can do it! I went back to visit my re several times but went during off hours when they had consults or were closed for the afternoon to patients. I wanted them to see my belly and then the baby but didn't want to upset anyone.

Jendeis said...

What a wonderful post, Nancy. Thank you so much for putting all of our thoughts into a succinct and thoughtful expression.

Just today at Father's Day brunch, MIL (not totally in jest) told me that all we needed to do was to relax and to get John Dear a glass or two of wine. Ugh.

At least my RE's office gets it. The have a big notice on the incoming paperwork to be sensitive and not to bring in children. But, as you saw what I went through a couple of weeks ago, some people don't get it. I'm so glad that you do. :)

Anonymous said...

Last year I was diagnosed with breast cancer and for some reason they had me go in to see my radiologist before my oncologist. They took my picture for my file. Why? I don't know. The next time they would see me I would not have hair. After going for radiation for a few visits they said they wanted to retake my pic. I asked if it was because I had no hair now and they said "No. You really don't look like you in that pic. You looked so sad. Were you sad?" Um.....I was getting ready to start chemo and radiation and I was only 38 years old. What do you think, Sherlock? Many in the medical field have no idea of what it feels like to be on the other side even though they deal with it every day.

Geohde said...

Well said.

I am kind of taken aback that your RE didn't get how shite it is to see pregnant bellies/kids when you've just bombed another cycle. Never made ME feel hopeful!


JamieD said...

Thank you for this post. I get so many comments and I usually just smile and not, hoping the conversation will end. I never speak up for myself because I don't want to make the other person feel uncomfortable. But you know what? I am sick and tired of being the uncomfortable one in the conversation.

Rachel Inbar said...

When I was going through infertility, I remember thinking how nice it was that the non-pregnant women had to be there before 8:30, while the pregnant women had appointments for after 9. If you were still there after 9, you might run into a pregnant belly, but earlier than that you were 'safe'.

Tricia said...

Wow. What a great post. I can't believe your RE wouldn't understand that. I would hate to see a pg belly in my office. It's bad enough that every person on earth seems to pg now that spring is here. I wish I had the guts to say something to those "trying is the fun part" people. I usually just stutter, get annoyed and walk away. The ones I won't let off the hook are the "Are you sure you want this? A baby is going to change everything. You are so young. Maybe you should wait a few years." Are you f-ing kidding me? I just can't. The gaul of those people makes steam blow out my ears.

Jill said...

It's the worst when you try to explain and people JUST DON'T GET IT! It's sad to hear "why don't you just adopt? Wouldn't you love an adopted child as much as you would love one you gave birth to?" even after you've explained that you just need to experience the pregnancy and everything that goes with it... and how you feel broken... and how, at times, adoption feels like giving up.

Pamela Jeanne said...

Just blows my mind that an RE and nurse steeped in IF could be so out in left field on this. It reminded me of my ob-gyn years ago who had a few patients looking to understand why they couldn't conceive. I was one of them. As he learned more about me and others in my shoes, he showed great empathy. I told him that coming to his office where pregnant women were all but hanging from the rafters was very difficult. He softly said, "I've always worried about that. Now you've confirmed it...I'm sorry that must be painful." What a contrast to your experience. So much work to be done. Sigh. Thanks for commmenting on the NYT and on my site. Your willingness to speak out and to educate are just one of the reasons I admire you so much.

**susy** said...

Yay for speaking up. From what I've learned of you reading this blog, I know you wldnt stay quiet. And good for you (and us, IFers) for speaking up. Since I recently got my first bfp, walking into the RE's today was different, I know while it CAN give hope to some, I know it can be a punch in the stomach to most. I tried to quiet abt it, around the waiting room, b/c I won't forget how it felt to me.
I'm glad you said something, even if it didn't FULLY hit home w/ them.

Jen said...

I read some of the comments that were in response to the article you posted and..."Holy Crap." I can't believe some of these people. I was blessed to not deal with infertility and I can imagine what it would be like. It's not like not being able to get that nice car you've been wanting and can't have. To invalidate the feelings of someone dealing with IF is just wrong.

Before TTC, I didn't understand that suggesting adoption can be hurtful as well. I used to think that was not the answer, but a solution at least. Reading some of the Ifers feelings on it helped me to see how it may not even be an option for some.

Don't even get me started on #8's comment about her twins. I feel bad for them because I'm sure they'll feel their mother's resentment towards them for "ruining" her life. I HATE that parents don't realize what they do can affect their children for the rest of their lives.

gabrielle said...

No way this post could be too long. The things you say are too important.

I am a little shocked at your RE and Nurse's reaction (and Jendeis, I am jealous of your clinic's sensitivity to the issue.)I get that they as professionals feel a need to see their "successes" but I totally don't get their misunderstanding of how a woman TTC might not welcome a big belly in front of her at the clinic.

At this point, I am as out as out can be. And for the most part, have been pretty pleasantly surprised by most reactions and support that I have received (from the people I expected it from the least) and pretty annoyed with the "Why don't you just adopt" mantra that I am getting from other folks who are unavoidable in my daily life. but as you said, I think the ratio of good to undesirable responses has been worth the reveal.

Kaci said...

I can't "get it" the way that a lot of your readers can, but I can "get it" enough to think that your RE is crazy! I would have expected him & the nurse to be a lot more understanding. I'm guessing that he's told other successes the same thing, and wonder - were you possibly the first to say no?

As for offering the others hope, I don't doubt for a second that almost every woman sitting in that waiting room could quote the statistics. They don't need it shoved in their faces.

I just can't understand...I *try* really hard to be sensitive & understanding - I have asked friends if they were *sure* they were ok with seeing me (when I was pregnant) or seeing me with the kids...just because I want them to know that I understand if it's too much for them on a particular day.

I'm rambling...

Amber said...

I do the "talk" all the time...however, I can only do it when I am not emotional, angry ect. It takes s-lot of maturity (yea me!) to be able to talk to someone in a manner they will understand. The key , I realize, is to have empathy for the clueless person. I know..ironic...the one who is hurt has to show compassion for the one who is hurtful. But with that attitude I can talk to them in a way they will hear. Otherwise I would just rant at them and no deeper understanding would be reached. I'd just become that stereotypical, bitchy, bitter, uptight infertile (Which I am but I done have to show it).

But with an RE? I would not expect to need to have the talk with them. Shockingly clueless.

Amber said...

One more thing. I don't think you backed down with the RE and Nurse. Clearly they were not going to change their mind so it's not worth you time, effort, frustration to keep trying.

Anonymous said...

Nancy - I just had to comment on this one. Your post is really great and hits the nail on the head. I am glad that my RE does not allow children. There are signs everywhere saying it. They only see pregnant ladies up to 12 wks (some clinical studies require 12 wk visit), but most ladies are discreet as I try to be. i am having twins so when I go in for my 12 wk visit, I will be showing. I hope no one gets offended, but I don't have a choice. I agree with you that pg ladies shouldn't go in there to show off the belly. It is too heartbreaking for IFers.

I am blessed to have friends and family that really try to understand what we're going through. We didn't tell all the fam until we were about to do the ER after 3 yrs of IF. I didn't want to hear how people thought we were too young when we started trying. My best friend researched IVF so she would understand what I'm going through as much as possible. She's great!

We should all try to educate people on IF when given the opportunity.


Anonymous said...

I agree 200% with what you are saying. My RE's nurse said the same thing to me, and I said "no way" would I go back there. They gave me the whole "hope" bs speech, and I remember thinking, "Wow, they must have a whole lot of evolved IFs here, b/c I wouldn't feel "hope" if I saw a big belly, I'd feel pissed and like someone invaded my space. My space where I can look around and know that even if we don't talk and really avoid each other's eyes, everyone in the waiting room is in the same boat." Good for you for trying to make them understand.

Io said...

Go you for saying something. I can't really add to what everyone else has already said, but big props to you.

Anonymous said...

So important to be open and to educate people. Great topic.

There are other things to be careful about saying, connected to infertility. I am adopted. In the same way we all are offended by people who don't understand the perspective of infertile women, sometimes I'm not sure people think about what it's like for adoptees to hear strong reluctance to adopt, things like it's just not the same to be adopted. I get offended, but no biggy, I do know what women are feeling when they say that. But I want to share my insider knowledge and say the adopted child loves you and needs you 100%, the same as they would their biological parent. You'll be such an important person and the center of their universe and will be Mom to them in every sense.

We ourselves plan to adopt regardless of the outcome of fertility treatments. I only have positive feelings about it and I have to wonder, will those positive feelings about adoption actually help fertility? Because then it's less angst-ridden over potentially not getting pregnant. Anxiety being a bad thing. Food for thought!

Christina said...

When I got the paperwork for my RE's office at the bottom in bolded print it said "due to the sensitivity of others please refrain from bringing children with you to appointments". All I could think when I read that was AMEN! Just like people going to a RE's office don't want to see pregnant women walking through there we don't want to see children everywhere either!

Katherine said...

Ugh...they can be so clueless. During this last cycle, all three (count 'em--THREE) of my RE's front desk receptionists were pregnant at the same time. As we poor, pitiful infertiles sat in the waiting room, we could clearly hear them bitching about the rigors of pregnancy. And this was EVERY TIME I went. I finally complained to my RE, and I have to say, things changed--but I must say, how stupid and insensitive can you be?

Kristine said...

I always found it painful to see pregnant women, or women come in with their babies, when I was in the RE's waiting room. The worst was one the first RE that I saw had a pregnant receptionist.

I stopped by my RE's office a couple weeks ago to show off our baby (after 7 years of trying). I felt awful having to go through the waiting room, and then at the end, I ended up walking out with a woman who was gearing up for a cycle. I really wanted to apologize to her and almost make, hey, it took me 7 years to get here..please don't hate me.

loribeth said...

Here from Mel's Friday roundup. Hard to believe people working with infertile patients could be so naive, but I'm really not surprised. I used to see children at my own clinic from time to time.

I attended RTS bereavement training some years ago, along with a bunch of nurses & other professionals who work with parents who have lost pregnancies. One of the presenters mentioned how difficult it is for many bereaved moms to see pregnant women & suggested reassiging pregnant nurses, if possible. One of the nurses said, "Oh, I've been pregnant, & nobody has ever noticed!" A bunch of the bereaved moms in the audience immediately called her on that & said, "Wanna bet??" & "Oh, I'll bet they have, they just didn't say anything to you about it!" The nurse looked really surprised. Duh...

Freyja said...

I am so vocal about the IF perspective that I generally instill silence in my audience. *oops*