Monday, May 17, 2010

Where's my parade?

I have two close work friends that were diagnosed with breast cancer at a young age. Between the two of them I have attended a wine and cheese party where we were encouraged to shower one friend with gifts, made a meal for another friend's family (the week before one of my IVF retrievals), contributed to a fund to pay for one friend to have her house cleaned regularly, made phone calls, sent emails, and participated in other supportive activities.

I know I shouldn't compare infertility to someone with cancer. First of all, we aren't likely to die from infertility (although it feels like it most days). And our treatments are arguably less arduous (we don't lose our hair, just our minds).

But I can't help but think that it is unfair that most of us can't even get our Facebook "friends" to acknowledge our "infertility outings" on Facebook during Infertility Awareness Week. I can't help but think that it is unfair that most of us hide our infertility and cringe when an article about our struggles appears online because we know the comments from readers will be so painful.

Why shouldn't friends and family shower us with gifts and cook us dinner when stimulation meds are making us feel sluggish?

So what do you think? Am I out of line? And if not, how do we change this? Where did we go wrong?

Shouldn't the community of womanhood band together and fight for everyone to become a mother?

44 comments:

areyoukiddingme said...

You are not out of line. I think girlfriends ought to take you out and get you drunk every time you get some bad news. Or maybe get you a pedicure. Whatever. Something.

Ernie said...

It is frustrating that there are some life changing conditions that are okay to talk about, and others that are not. I don't know if it's the way the media portrays infertility and infertility treatments? But really, how great would it be if you could say "I have Infertility", and be showered with the same love and support you would if you said "I have diabetes", etc.

S said...

I agree that good friends should be there for support any time you are going through something difficult. I think sometimes they just don't know how to do it.

Infertility is a tricky thing. As you say, it is not life-threatening in the sense that you will literally die if you don't reproduce. I think another reason people feel uncomfortable talking about it stems from many Americans' reluctance to discuss things closely related to a couple's sex life.

Jana said...

I totally agree with you. We need our hope and encourage from our friends just like everyone else....a dinner or even a just because party would be awesome....
somedaymine.blogspot.com

loribeth said...

Amen. :p This is so very, very true, & you've said it very well! I think greater infertility awareness is the only thing that's going prompt change, but that's easier said than done, as we all know.

On the flip side of that coin -- I blogged/whined (lol) not too long ago that my 25th wedding anniversary is coming up, & my next birthday will be my (gulp) 50th. We're organizing a party for my parents' 50th & attending a wedding this summer. Do you think anyone is organizing anything for us?? (I wouldn't bet on it.) Over the past 25 years, I've been to umpteen birthday parties, baptisms, first communions & confirmations, engagement parties, weddings, etc., for people in the extended family, as well as friends. I just wish that I wasn't always the one celebrating other people all the time -- that just for once, the party was for ME & dh. It seems like, because we don't have any kids, we don't have anything to celebrate, & what do have tends to get overlooked.

Silver said...

No - I'm with you! I too have a friend who had breast cancer and we all mucked in to help them with various things while it's really only my parents who have mucked in to help us during treatment. And you're right - we won't die of our infertility (although women who have not had children are more susceptible to several cancers and studies have shown that the depression and anxiety that go along with involuntary childlessness are comparable to patients with cancer and AIDS). While my friend was going through her treatment, we talked a lot about the "side-effects" of cancer and infertility - losing friends who can't cope with our difficulties, the money worries, the effect on our marriages, fears for the future. But now she is in full remission - her particular cancer does not recur after this length of time - and it is painful to think that she, now healthy and with one child, would almost certainly not swap places with me and my childlessness, even if it meant never having had the cancer.

The other thing you are right about, that makes me more angry than anything, is the comments made by the ignorant on articles about infertility. It's terribly un-PC to say that someone has brought cancer on themselves or that they should suck it up because some people have it worse or that they should pay for their own treatment - even though, in a few cases, these things might be true. But apparently, it's quite OK to be utterly heartless and cruel to women who cannot bear a child.

Sorry - you can tell it's a sore spot for me! Didn't mean to hijack your blog!

Enough happiness said...

Great post. I think we are raised to bring food for a illness or a death in the family. But, fertility treatments ARE viewed differently.

Life Happens said...

Thanks for writing this post. Sometimes I feel like us infertiles get pushed to the side, mean while, we are expected to pitch in and help out with everyone else's good news. Why can't we be offered the same courtesy when we are dealing with IF??!!

That's why I enjoy the bond that we all share in the blogosphere. Even when our real life friends don't understand, there will always be blogger friends who do!

Michelle said...

TOTALLY NOT out of line. I could not agree more. I understand it is cancer but still we at least deserve to be acknowledged. We deserve to have support. It is so FRUSTRATING the things people say. Could you even imagine someone saying such hurtful things to someone with breast cancer? Never.

Julize said...

I couldn't agree more and yet, at the same time, I know it will never change. Sad.

IVF 40+ said...

It is a strange world where some things are more 'valuable' in the sympathy range than others. Non of my friends get that even tho I am preggers I am still infertile. Of course I haven't mentioned the donor egg situation but I doubt it would make any different.

I am ashamed to say that I stopped talking about my IF. What can we do?? There must be something!

lifebytheday said...

I totally agree, and I'd be one of the first people out there on the picket line if my DH wasn't so private. I think it's disgraceful that it is still so secretive and "dirty."

Nic said...

You are not out of line.
I hide my IF from most people. The poeople who do know seem to have given up asking me how I am doing.
People should be considerate of us and our feelings as well.
IF is such a lonely, isolating, hidden disease
x

Lisa said...

You are most definitely not out of line. We are out of the closet with our infertility struggles as far as family and close friends are concerned and no one has once offered to help us out in any way. They are there to lend emotional support every once in a while but IF is definitely not something they view as significant or life altering as a cancer or heart disease diagnosis. Not to mention the $$ we spend ... can you imagine organizing a fundraising party to help you pay for IVF? I can only imagine the reactions we'd get.

Bon said...

I guess I am a minority.

After my IVF retrieval, my SIL brought over Starbucks and a frozen homecooked meal.

After my lap, my other SIL had delivered 6 gormet cupcakes.

And after my adoption failed last December, my best friend came over and rid my house of all baby items so I wouldn't have to move them myself or wake up and see them there. She then proceeded to go out and get drunk with us on New Years to toast what a shitty year it had been.

So overall, I've had some good support. I guess I am pretty lucky although we have a LONG way to go.

Megan said...

Bonnie,

You are VERY lucky. I got two cards each from two aunts. My mother and sister (supposedly the people closest to me) have done nothing by way of support. I think the whole thing makes them uncomfortable.

It has done irrepairable harm to our relationships.

Frau said...

I think most people are confused about infertility. I've had some people tell me that their life would be sad and empty without children. (Back when we had been married 5 years people thought we should be "reminded.") As the years go on, the same people act like I drew the "Get out of Jail free" card.

Most people are so confused that they just try and pretend it isn't there. Annoying, but I actually prefer it to those doofuses that notice try and explain it to me.

irrationalexuberance said...

Yeah -- a parade would be nice, or at least some sort of acknowledgement that what we are going thrugh is tough. But instead people just ignore the 8000 pound gorilla staring at them.

I'm a little bit bitter right now (one of my closest friends just spectacularly failed at being a friend), but my view is that it will always be "that which is not spoken about" because it is (a) related to sex and (b) so easy for most people

thegalwho said...

Most people ARE confused by Infertility. I posted "have you hugged an infertile?" on my Facebook status and an argument ensued between 4 of my friends - 3 saying people shouldn't wallow and that everyone deserves hugs NOT just one particular group (I posted it on Mothers Day - a day where an Infertile would need a hug!) and one (Miss Sass from Life of Bee's) who defended me to the hilt - that girl rocks.

That comment/status debacle was followed up by my cousin saying "I didn't think you were infertile - just that you had trouble getting pregnant" - um that is also defined as infertility. And then when I told her that I had trouble holding onto pregnancies I got "well at least you know you can get pregnant so it will just be a matter of time..."

Basically I've found if someone hasn't been touched by infertility, then they have no idea and no want to even stat to educate themselves.

No you're not out of line - at all!

Augusta said...

Disenfranchised grief is the hardest of griefs. Just ask anyone who lost a loved one to AIDS in the 80s or 90s.

My partner and I got married a few months after our fertility treatments unequivocally failed. For some reason, it seemed quite alright to feel the fullness of the joy we were supposed to feel about getting married, but not the depth of the grief about not being able to conceive. I was lucky to have some amazing friends who let me share my grief with them and didn't ask me to be happy through it. I didn't get a parade, but I feel like being supported by a few close friends was a miracle. And for those who didn't understand, that was difficult.

Thanks for your post.

Libby said...

I feel your pain. I don't wish IF on anyone, however, I think that's the only way most people would "get it." I remember seeing a card for miscarriage at a Hallmark store and wondering why no one ever sent me one of those. It's not like there weren't enough opportunities. *snif*

My most fervent supporter is a friend at work, 15 years older, who walked the same path as me many years ago. She never did have children, and she never adopted. She keeps me motivated, and I am free to ask her for advice. She also checks in on me which is something some of my longtime friends forget to do. I know I'm lucky to have her support. Wish we all had that IRL.

mybumpyjourney said...

How very true!!! Our infertility makes OTHER people feel so uncomfortable- I think they just avoid it themselves.
I would love to shower friends with love and support during IF treatments- but it is never talked about.

SIGH.

{{HUGS}}

I wish your friends a clean bill of health!!

hope4joy said...

Damn staight you are right. I don't have any answers, although I wish I did. People say they support you and blah blah blah but where are they in your darkest hours? In my experience everyone shows up during the 2 week wait when the show gets exciting. Until then and after the negative beta..nothing.

portraitsinsepia said...

Infertility like cancer, depression, drug addiction, makes those who don't suffer from it feel uncomfortable and awkward...thereby making the infertile feel awkward and uncomfortable. Sometimes silence is just easier than dealing with it...not suggesting that's what we should promote. (And some medications do cause hair loss although not to the extreme that chemotherapy causes it.) I think the common thread is suffering and feeling alone in our pain regardless of whether it's infertility or cancer.

Carrie said...

I completely and totally, 100%....agree!! Great post!!!

Rebecca said...

Infertility is a medical condition. Even the World Health Organization has officially labeled it as such. (i read that somewhere; i have no idea where but i saw it on their website too) After awhile, don't our friends wonder 'hey, wonder why I never see her anymore?' or 'haven't heard in awhile how her fertility treatments are going - but I DON'T SEE A KID'? I mean, they gotta wonder after awhile.

Any life situation involving endurance, suffering and loneliness (though by this definition, we can see why) needs support. Community, friend, family and workplace support. Can anyone have too much love? Encouragement? Cheering on? What about too many prayers? Kind emails? Cards? And don't get me started on the FINANCIAL! I'm so broke it ain't funny... and I don't have my kiddos yet...

And yet, as much as I have yearned for each of these and more, I tell myself: be the one whom you cry for. Be that one.

In tears, I try to be.

inBetween said...

You are so right about this!!! I often wish I could have some physical manifestation of the pain (save for the obvious of not having children) so that someone would give me a sympathetic pat on the back every now and them.

But damn, if I could put out a little jar at the grocery store asking for donations to help pay for my infertility treatments, THAT will be the day we have arrived at equity.

LenaBug said...

I am right there with you, sister. Most of my friends and family (on and off facebook) know that dh and I are IF, but they NEVER ask how I'm doing, and if I so much as mention anything about babies (including congratulating my friends and family who are constantly popping up pregnant) I immediately get wacked with "you'll have kids eventually", "adopt and you'll get pregnant instantly", and "just be glad you're not having to (insert dirty baby job here) and get to have fun with your dh instead" comments. I can't stand it!! More than once I've wanted to just SCREAM at people for their incensitivity.

Grace said...

Gosh! I love this post! Well said! We deserve empathy and for people to take care of us! :-)

And friends should donate for us to pay for treatments, it shouldn't be a big issue!

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Debbie said...

Well said. I know I have been torn several times on my journey about sharing my infertility and “going dark.” I started out with the optimism that the people that love me should know what I am going through. If they were in my shoes, I would want them to do that, so I could support them. And people felt bad at first, and asked dumb questions, and I answered, knowing it would take some time to educate them. And then they got back to their lives, and I was still living the hell. Slowly I found myself pulling away and sharing less, and they didn’t ask. I think when we don’t get the kind of support we want, it hurts, and so we start shutting down to protect ourselves. I guess it’s a defense mechanism. However, I know in my heart that the only way that people are going to be more sensitive to the issue and know how to act is if we educate them. So I try my best to educate whenever an opportunity presents itself. My feeling is that even if we don’t help ourselves, maybe they will be more informed and then perhaps tell someone else, and eventually we will live among people that aren’t so insensitive to infertility.

Panamahat said...

I am TOTALLY with you on this.

Haley said...

You are NOT out of line. I wish I could post this for the world to see. People just don't get it!!! And it does feel like a disease some days. IF is hard everyday too! Well said!!!

裕以 said...

Efforts to fight fuel!........................................................

strongblonde said...

i know i'm late to the game.... BUT....

as someone who has IF and had cancer?? i totally agree with you. people want to help when they hear that you have to go through chemo, etc. but when you have to go through the months of getting ready for your IVF cycle? no one is around. i was lucky to have friends who were nurses, too, who gave me my shots, my doses of laughter, and helped me through the process. i think it's more than the general population can bear.

i can say that there are a lot of people that are not comfortable with "sickness" of any kind. my friend actually "broke up" with me shortly after my last round of chemo and i honestly think that she didn't know how to deal with adversity. i was infertile. i had cancer. she was pregnant. she couldn't deal. she didn't know how to be supportive, so she broke off all communication. at the time? i was devistated. and i hated her. now? i realize she did me a favor. what kind of friend is that anyway?

this is much longer and much more "me-focused" than i intended, but i wanted to say that i wish that people could just GET IT already!!

xx

strongblonde said...

i know i'm late to the game.... BUT....

as someone who has IF and had cancer?? i totally agree with you. people want to help when they hear that you have to go through chemo, etc. but when you have to go through the months of getting ready for your IVF cycle? no one is around. i was lucky to have friends who were nurses, too, who gave me my shots, my doses of laughter, and helped me through the process. i think it's more than the general population can bear.

i can say that there are a lot of people that are not comfortable with "sickness" of any kind. my friend actually "broke up" with me shortly after my last round of chemo and i honestly think that she didn't know how to deal with adversity. i was infertile. i had cancer. she was pregnant. she couldn't deal. she didn't know how to be supportive, so she broke off all communication. at the time? i was devistated. and i hated her. now? i realize she did me a favor. what kind of friend is that anyway?

this is much longer and much more "me-focused" than i intended, but i wanted to say that i wish that people could just GET IT already!!

xx

onefifthfox said...

You're absolutely right. Being infertile is hard. Very hard. You deserve support, and to be able to talk about your struggles without embarrassment. You deserve to have friends help you and sympathise with you, and yet so much of the world of IF is hidden to most people. They just don't understand it. We should make them.

xxx

Buffee said...

I cried when I read your blog. I'm 33 and I had a hysterectomy last year, due to endometriosis and ovarian cysts. I was never able to have children. Infertility is a painful and lonely road. I'm sending you a hug, from me, a woman who has walked in similar shoes!

Best of luck!

roztime said...

I am also late to the game, and really I just want to say YES. We deserve the same treatment as someone with MS or MD or another long-term disability. Something like chronic pain (although God knows that's not taken as seriously as it should be). Because it is a life long disability, complete with debilitating physical, emotional, spiritual effects.

YES.

foxypopcorn said...

I just found your blog from a link at 'My Bumpy Journey'. I had to comment on you infertility art journal. Those are incredible. Really incredible. The combination of words and images connects with my heart in ways that I just can find words to express. Thank you for sharing these with us.

Do you have a compilation journal that I can purchase? Please email me.

You are an incredible artist.

Amber said...

I actually have thyroid cancer and posted to my FT blog (I know you from the High FSH forum) about how I found for my type of cancer, infertility has affected my life much more then my cancer (granted my cancer has a very high cure rate). Just checking in and hope your current state of LCF is going ok.

Jos and Jennifer said...

We struggled with infertility for several years before finally adopting our eldest son. It was easily the hardest most painful time in my life - I feel blessed that adoption was our salvation. And I was further blessed to have my infertility suddenly vanish after the adoption. I'm sorry you are in the midst of it all.

Dear Personal grocer said...

I've had both infertility and cancer!While they share a failure of cells to behave properly they really are quite different. I've had Crohn's disease for decades. Nobody ever gives you anything for that one.

It's all awful. Don't kid yourself that one form of malfunction is better than another.

Cancer happens to a disease that has become well branded. Over the course of the last 30 years people have been so socialized on how to "react" to it and treat people. Previously, just as with infertility, it was never spoken of. Remember, the big "c"?

Infertility broke my heart, and poisoned a marriage. But, cancer? almost killed me, broke my already fragile body and frightened my son and still wreaks havoc.

If you are eligible, why not adopt? Not an option open to people with incurable diseases like C.D. Infertility, unlike other disorders, goes away once you get a baby.

Cancer is a disease that resonates with many people.It is generally quite visible. Perhaps,that's why they react with so much generosity.Infertility is less well understood. Maybe people think it is contagious? Maybe you need new friends? Good Luck.

masquerade said...

i just stumbled upon your blog and i applaud you for this post. i was only 32 when i had to have a hysterectomy (no prior children, and it was an emergency). NONE of my classmates came through. they did, however, come through with a parade for a peer who had a cancer diagnosis. for me, it was just, oh, she'll be ok, or take care of yourselves. i really can't look at these people without cringing. cancer is a scary thing, and deserves all of its attention, but there are other things just as hurtful and scary that go unacknowledged. my favorite was, well, the disease is gone, so why do you care? (i had adenomyosis). would they say the same thing to someone with uterine cancer? Or with breast cancer after a myemectomy? this all just made me a more compassionate person, but unfortunately took away my faith in others.

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