Wednesday, April 8, 2009

Breaking the silence

My dear friend Lisa is feeling alone in her long, brutal infertility struggle. This makes me sad and angry. Lisa has a great support sytem in the blogosphere, but IRL no one knows of her struggles. I can't help but be upset and frustrated that Lisa has to suffer in silence without any support from those closest to her. It's not fair and it's one more reason why I despise infertility. No one else who's battling a disease or medical condition is made to feel that they have to suffer through it alone in silence, so why does Lisa feel that she has to do that? Obviously the answer is not an easy one to establish. The reasons are likely as complex as infertility itself, but it is my personal opinion that the underlying issue is the negative stigma that surrounds infertility. Infertility is one of those topics (just like baby loss) that makes people squirm in their seats and I'm not sure why?

Infertility is already full of shame, guilt and feelings of failure. Infertiles feel broken and defective. Because of our "defect" we feel alienated from our friends and family who are not defective. We, infertiles, are outsiders trying to navigate our way in a fertile world. It's not an easy path to travel publicly, so I can't imagine how difficult it must be to travel it silently.

All infertiles suffer alone to some extent as we are constantly inundated with reminders of our inability to have children from media and those around us. We have to endure the torture of baby showers. We have to listen to our friends discuss their "oops pregnancies." We have to hear our friends complain about their kids. We have to hear just how lucky we are that we get to sleep in or do this, that, and the other thing because we don't have children. All of this is said as we sit silently wishing, wanting, begging, praying and hoping that someday, maybe just maybe, we will be so lucky to have a baby of our own.

I imagine that infertiles like Lisa who suffer through infertility in silence are further alienated and alone. Infertility is consuming and literally takes over your life. For many of us having a baby becomes the one and only thing that you think about. Infertility literally becomes a large part of who we are and it reshapes our personalities.

Infertility is a complex disease like any other that for many can be successfully combatted with treatments. For some like Lisa and me it's a long-term battle that is exhausting physically, emotionally, and financially. Such difficult struggles with any disease are aided with love, support and encouragement, but this can only be provided when others know of your battle.

I have found that by going public with my infertility struggle I have received love, support, and encouragement, but I've also opened myself up to criticism, judgement, and an much unwanted advice. Early on in my journey I heard some of the worst so-called advice: "just relax and you'll get pregnant", "drink some of the water around here and you'll get pregnant", "if you adopt you'll get pregnant", "have you tried x, y and z?", and my all time favorite is "my husband just looks at me and I get pregnant" (seriously, how is that helpful?!). I remember how hurtful all of these things were to me, but fortunately I rarely hear those things anymore. This is not to say that I don't hear other hurtful things, such as "why don't you just adopt?", but it's much less often than in the early stages of my journey. When I went public with my infertility struggle I accepted (and still do) the risk of getting such unwanted advice, yet I still cringe when I hear it.

There is no one right way to deal with and battle infertility. Some people, like me, prefer to do it publicly and others, like Lisa, choose to do it silently. I just hope that it is Lisa's own personal choice to battle this ugly disease in silence, but I have a feeling that some of her decision has to do with society's negative perception of the infertile. Therefore, it is my hope that by publicizing my infertility battle I am helping others to understand the disease and by doing so help to dissolve the negative stigma that surrounds infertility. I hope that my very vocal, honest, and often uncomfortably raw discussion of my infertility struggle will help encourage others to break their silence and come out of the shadows into the light.


Bluebird said...

Well said. You're entirely right. About everything.

I used to be like Lisa. When I became pregnant with twins, then people knew - or thought they knew - about our fertility treatments. After we lost our twins. . . I just threw it all out there. I don't have anything else to loose. So now I *hope* I'm a bit more like you - paving the way a bit, and putting IF and baby loss in people's faces . . . but I was still much more comfortable like Lisa :), as lonely and isolating as it was.

TeriLynn said...

I totally know what you are going through. ALso sad for your friend Lisa~! I see the doctor again next week for my endro. and cyst of 7cm on my right side! I just some days just want to crawl in a hole and not come out! I am tired of people asking me get another opinion on thing when i have been to 3 diffent doctors..
I love reading your blogs it is so uplifting.
Hopefully see you soon at girls night out. April 15th 6pm Cancun!

TeriLynn said...

I have been told all of the same things for advice> Over and over again, and it get tiring after a while.

Kay said...

Here is a comeback for ya the next time Niki my dear- "I hear shoving my foot so far up your a** the water on my knee will quench your thirst will make me pregnant!! So do you mind bending over???"

Duck said...

AFM most people do not know about our infertility, i have a few friends who know but most family/friends don't. I do it for me, because life is simpler when I don't have to think/talk about it, and part of it is I don't want to be defined as an infertile, an IM etc, I want to be just plain old me, I don't really want to talk about it in real life because I have enough support through blogging and blogging friends who are know IRL friends. There are times that I wished that everyone knew, but, it's all about a balance, and for me, this works best, and keeps my life in balance.

Lost in Space said...

This is such a hard thing to do. We are still very much "in the closet" regarding infertility when it comes to our families. For us it is just easier this way. Most of the few friends we have told have grown tired of it all or have just run out of things to say. I'm still glad that someone knows, but I still understand where Lisa is at too. Not all support is "good" support.

I'm sorry you have heard all of those basic cliches, Niki. I have too, but somehow they piss me off even more when they are said to a friend. I guess it is the best way to distinguish those who know anything about IF and those who do not.

I'm proud of you for really speaking out, Niki. Your strength continues to shine through.

Tina said...

We started out not telling anyone that we were trying to have a baby. I am close to my mom and eventually told her about my irregular cycles. When we found out I was pregnant and subsequently miscarrying, we were only telling immediately family (it was around the holidays and we felt we needed to explain why we avoided everyone).

Unfortunately when I had to go in for surgery for the ruptured ectopic EVERYONE found out. I guess when you are in the hospital for 4 days it becomes public knowledge.

I wanted to go through this silently. I didn't want people asking me about what was happening. I really was uncomfortable with people knowing about our "issues." I didn't want the pity look. BUT NOW EVERYONE KNOWS. People think that since I have had the ectopic that they can ask if we are trying again, and that they are privy to our "going ons." There is nothing I can do about it. God at times I wish no one knew...

On the other hand, holy crap I have had so much support. People I don't know well have told me their stories (it doesn't seem to matter if it really relates or not), but some women have told me their after ectopic successes.

All I know is that I understand both sides of speaking out or staying quiet about infertility. IT ALL SUCKS THOUGH!

Thank you for speaking out about infertility. Thank you for giving a voice to it. You and all the fellow bloggers out there help so many people who are silently, or who feel all alone, get through this horrible "disease" with support.


Kelly said...

The only way we can truly get through to people is to break the silence. I don't idle anymore when it comes to the snarky comments or questions. I'll give them my life story in 5 seconds flat and stop them dead in their tracks. I don't think they mean harm with their comments but they are insanely clueless about our secret struggle to become a mom.

Caroline said...

Hi Niki,

I really love this honest and well written post. IF is the most difficult struggle I have ever experienced, and yet many of my IRL friends try to minimise the pain with comments such as "just be patient - you'll get there in the end" (as they bounce their own beautiful baby on their knee)...It is so frustrating.
Very few people understand the implications that a diagnosis of infertility brings. The emotional, social, spiritual, financial and physical costs are huge.
Thank you for writing this post. It makes me feel validated in my struggle to cope with the harrowing IVF experience that I am currently undergoing.
Hugs to you

Brenna said...

I'm completely unable to keep secrets about ANYTHING--an unfortunate personality trait that's been with me since childhood. So needless to say, everyone knows everything about our infertility, treatments, child loss, etc. (the generous amont them pretend to care...). I can't say for sure that one tactic is better than the other, but I will say that it feels good to have the support of friends and family during the tough times.

MyLifeMyWorld-SharingADream said...

Wow that was so well written. I have not experienced life in your shoes but I am thankful you do write about your personal struggle and the view from your side of the coin.

To quote you:
I hope that my very vocal, honest, and often uncomfortably raw discussion of my infertility struggle will help encourage others to break their silence and come out of the shadows into the light.

I hope so too, but I also wanted you to know that your blog not only helps infertiles but also the fertiles to be more sensitive and understanding of what you go through.

Thank you

Tom and Margit said...

You are always so right and always in such an eloquent way.
It is awful that we have to feel shame, guilt or any of those feelings.
I had someone tell me at work, who got pregnant very easily, that DH and I were paranoid with Isabella.
I said, well we lost one child, and it took a lot to get where we are...some people just don't think.
I am glad to have the support I do through wonderful friends like you Niki!