Author: Emily

Here’s the last of my reposts for National Infertility Awareness Week. I’m especially proud of this one for some reason. Perhaps because this post forced me to stand up to the ignorance of infertility … Anyway, to see the original post, click here.

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Dear Curious,

Thank you for your comment on my previous post. As always, I welcome any responses to what I write. To me, any response means that I’m effectively getting my words out into the world.

My last post did not mean to belittle Cancer as a disease. And yes, I realize that I was a bit over the top and melodramatic at the end. I truly debated as to whether or not I should respond to you. But then I thought that I should really practice what I preach.

And what I’ve been preaching lately is that it’s better to educate others about Infertility than perpetuating a myth.

In this case, it’s the myth that Infertility is not a disease, but rather just a “condition” that is a result of a “badly dealt hand” in life.

Or as Margaret Wente’s editorial in The Globe and The Mail indicates, “Many things in life are deeply unfair, and infertility is just one of them … … [In the] meantime, record numbers of people are embracing childlessness out of choice. It seems that one person’s deep unfairness is another’s blessed liberation.”

So, as an RN Case Manager … who has not only taken care of many Cancer patients at the hospital and has followed up with them on an ongoing basis after they’ve returned to their homes … let me take the opportunity here to dispell this myth.

1. Let’s first get our definitions straight.

Condition: a usually defective state of health (from Merriam-Webster Online Dictionary)

Disease: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms (from Merriam-Webster Online Dictionary)

Cancer: a term used for diseases in which abnormal cells divide without control and are able to invade other tissues (from the National Cancer Institute website)

Diabetes: a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin (from the American Diabetes Association website)

Infertility: a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse (as defined by the World Health Organization, as stated by the American Society for Reproductive Medicine website).

2. Now, let’s discuss the difference between a condition and a disease.

Many diseases started out as a being known as a “condition.” Diabetes was a “sugar condition.” Asthma was a “breathing condition.” It’s not until science began to do more research to determine the reason for its abnormal patterns in functioning that a condition came to be called a disease.

To me, this is why giving voice to Infertility and educating the general population is extremely important: so that more research can be done to discover how to effectively and consistently treat Infertility. And when I mean “consistently,” I mean that there should be a specific pathway (or guideline to follow) for treatment of Infertility. Much like there are standards of practice for treatment of the various types of Cancer.

3. Now let me discuss why I think all diseases aren’t fatal, as you’ve indicated.

Eczema isn’t fatal. Scleroderma isn’t fatal. Diabetes isn’t even fatal. What’s fatal is what happens if appropriate treatment is not carried out. That’s when other health conditions (or comorbidities) can add to the complications involving the disease.

Going back to Diabetes: If a Diabetic’s blood sugar isn’t controlled properly, then this could lead to diabetic nephropathy — or kidney disease. This is caused by the kidneys working overtime to filter out protein from the body. Continued overworking can cause kidney failure which could, again if untreated could cause toxicity in the body, ultimately leading to death. But would a pathologist consider diabetes as the cause of death in a situation like this? Likely no; it would most likely be kidney failure as a complication from Diabetes.

Now, substitute diabetes in this situation with, let’s say … pancreatic cancer. Again, pancreatic cancer could more likely be the complication in a fatal situation such as this.

4. So now let me talk about why I think complications from Infertility can be fatal.

First there’s the idea of an abnormal reproductive system; which, like most diseases, could be caused from a variety of different sources. In this case, it’s during any part of the reproductive cycle. But just for sh*ts and giggles … let’s say that — in determining the cause for Infertility — the woman discovers that she has Ovarian Cancer. Or we find out that the man has Testicular Cancer. Then I could logically assume (as you’ve pointed out) that Infertility can be related to Cancer (or vice versa, for that matter) and any complications that result from Cancer can be fatal.

Or … how about this? Let’s say, in the quest to have a child, a woman who has put her body at risk to become pregnant is suddenly more at risk during her pregnancy because of Pre-ecclampsia. And suddenly it becomes evident that a choice needs to be made as to whether to save the woman or her baby? I know women who have tragically been through this. And I hope, sometime in your life that you might have some empathy for them …

5. And finally, speaking of sympathy … I must point out that sympathy for my Infertility is not what I’m asking from you … or from anyone.

What I really want is empathy. And that would mean that I’d want the understanding from others that Infertility is a disease and it deserves to be recognize. It’s not something to be swept under the rug or ignored.

And quite frankly, I would hope that a person with Cancer would also want empathy rather than sympathy. For me, someone who is sympathetic can only “feel” pity and sorrow for someone’s misfortune. While a person who is empathetic has the ability to recognize, comprehend, perceive and directly feel the emotion of another. Seriously. I’d rather have someone recognize and comprehend how difficult it is to be in my situation than to just simply say (perhaps in their head), “Too bad, so sad.”

So here’s one last set of definitions.

Sympathy: the feeling or mental state brought about by such sensitivity (from Merriam-Webster Online Dictionary)

Empathy: the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner (from Merriam-Webster Online Dictionary)

So hopefully you now have a better understanding of why I wrote my last post.

I’m not asking for more recognition than what Cancer, with its multitude of community support, already has. I’m just simply asking for recognition.

And finally … just so you know. I am a survivor of Infertility … not because one of my parents suffered from Infertility (because my Mom did ) … and not because I ended up having children (because I didn’t) … I consider myself a survivor because I was able to sustain years of treatment for Infertility and came out the other end of a verrry long tunnel with my dignity (relatively) intact.

Best of luck in wherever your life takes you,
Emily

For National Infertility Awareness Week, I’ve been reposting some significant and relevant posts to this year’s theme: Don’t Ignore Infertility. Here’s the original link to this post.

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I am a Survivor of Infertility.

It sounds rather silly, given that I have nothing visible to show for the years I’ve been diagnosed with this disease. (Well, except for the added weight gain from all the medications … but that’s beside the point.) But it’s the truth.

It may sound strange to the average person that Infertility is considered a disease. After all, most people are rather inclined to think that it’s a “condition” rather than a disease. There’s even been debate that Infertility is considered a “lifestyle choice.” But we’ll get back to that one later.

Much like Cancer is a disease (an abnormal growth of cells which proliferate in an uncontrolled manner), so is Infertility. And I can even have the World Health Organization definition to back me up.

And much like a Cancer patient who has successfully completed treatment for their disease, I can also say that I am a survivor.

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I know, I know … I’ve made multiple comparisons of Infertility to Cancer in previous posts. And just so you know, it’s not as if this comparison hasn’t been made by other Infertility bloggers and/or other health care providers in Reproductive Health in the past.

Believe me, as an RN who has taken care of her fair share of Cancer patients, it’s not one that I do lightly. I do so, only to showcase the lack of support and education that Infertility receives when compared to Cancer.

If you’re like most people, the news of a family or friend recently diagnosed with Cancer will trigger a sense of empathy for that individual and their family. For me, it’s always been an immediate “That’s horrible!” or “How sad” statement when receiving the news. Then, the next time I see the individual or one of their family members, I might briefly ask them how they’re doing and how their treatment is coming along. And I’d make it a point to ask how they’re coping with everything. I do so knowing that I’m offering them an opportunity to let out some of those difficult emotions that come along whenever someone is going through a stressful situation.

For me, that’ how *I* like to offer my support. But others could likely offer to send a card, call the person, and/or offer to run some errands for them. And yet others will offer their unsolicited advice about how their “third cousin” beat by “sniffing glue” (or something just as odd). Either way, Cancer elicits that feeling of wanting to help a person out because … “G*d forbid, if something like that happened to me, I’d hope someone would do the same.”

Now, take this same situation, but substitute Cancer with Infertility. What immediate emotion would that disease trigger? Would you feel empathy for the woman? Would you feel more empathy for the woman, than the man (if that’s the case), perhaps thinking that Infertility is strictly her diagonsis? Would you send them a card?**

And the next time you see that person or couple, would you ask how they were doing? And how they’re coping with the disease? Would you ask them what kind of treatment they’re receiving? Would you offer to run errands for them, knowing that their lives have been tied to a specific minute-by-minute, hour-by-hour time schedule? Would you offer them unsolicited advice on how they should “just adopt” or “just relax”?

Okay, so I’m guessing that most people would answer “No” to those questions. Except maybe for that last one; because — believe me — I still get lots of incredibly insensitive “a$$vice” thrown at us on a daily basis. (Of which my response to those Infertiles who also deal with this situation … this is the perfect opportunity to educate others out there about how Infertility is a complicated disease with multiple layers of emotional struggles that can’t simply be “fixed” by just relaxing or adopting.)

Anyhoo …

As I said, I’m guessing that most people would answer “No.” And the reason is because Infertility is something that no one really wants to openly talk about. It’s the pink elephant in the middle of the room that people speak through it (rather than directly at it or about it). Even those individuals or couples who are diagnosed with it find it incredibly difficult to share. As stated in the recent SELF Magazine article, “Infertility is where breast cancer was in the 1970’s — completely in the closet.”

So this is where I, once again, emphasize that talking directly about Infertility is important. Giving Infertility a voice is essential. Educating others about Infertility is critical.

Why is this necessary? Because one brave and educated voice can spur a thousand other brave souls to tell their Infertility stories. And those courageous voices can turn around and educate their family and friends about the disease. And those family and friends can then tell their friends, and so on and so on … therefore creating a network of support.

And from there, maybe … just maybe, Infertility can receive the recognition as a disease that it needs. Maybe then, Infertility will elicit an empathy similar to that of Cancer.

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One last thing, and then I’ll wrap this up.

Yes, I do understand that Cancer is a “life or death” situation; and that receiving treatment determines whether or not a person survives. But let me ask you this? Isn’t Infertility a “life or death” situation when it comes to a child’s life? Isn’t receiving treatment for Infertility also determine whether or not a child survives?

For those affected by Cancer (whether as an individual, or a family member of the individual), the life of a loved one is on the line. For those affected by Infertility, the life of their child … not to mention their individual livelihood to sustain life through their own genes … is on the line.

And finally … for my “Living Child-free after Infertility” self, let me throw one more thing your way. What kind of sadness do you feel for a person with Cancer who has decided to stop treatments? A person who knows that his/her options are severely limited?

Would you respect the choice that he or she made; knowing that they gave considerable thought about their decision? Would you still respect their decision even though it might not be one that’s necessarily “conventional”?

Now … once again, substitute Cancer with Infertility.

Can you see now why Infertility is not a “lifestyle choice”? (Told you I’d get back to it … )

I don’t mean to come off as sounding like I can’t get “past” my own infertility (like Andie would think of me; as evidenced by her response to Pam‘s February article in FertilityAuthority.com). I don’t mean to sound as if any non-Infertile who reads this is an “ignorant fool” who doesn’t know me or my problems.

I simply write these feelings — these thoughts of mine — so that maybe … just maybe, a person (or two) can learn from them.

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My name is Emily … and I’m an Infertility Survivor.

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** Seriously, though … Have you ever seen a greeting card for Infertility? I think Hallmark needs to get right on this. Pronto.

In honor of NIAW, I’ve been reposting old blog posts to make sure that infertility is not ignored. Here’s the original link to the post.

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The first time I ever took a home pregnancy test (HPT) was on the morning of first wedding anniversary. Hubby & I had only recently decided that we were ready to start the next phase in our lives together. Plus, Aunt Flo had been missing for over a week by then, so I figured it was time.

I won’t lie … I also thought that the prospect of presenting positive “pee stick” as an anniversary gift would have made our first wedding anniversary together all that more memorable.

But when the test came back negative, I threw the stick away and climbed back into bed to cuddle with Hubby who was still sound asleep. And yes, I was disappointed … but at that time in our lives, Infertility was just a distant diagnosis, which was … in no way, related to me.

I’ve never told anyone this story before because until today, it wasn’t something that I considered very relevant to my life as an “Infertile.”

Hubby had been privy to this story, because later that day he happened upon the open HPT package in the trash and wondered why I took one. But otherwise, no one else in our lives had a clue that we were even “actively trying” at the time.

It was something that Hubby & I, as a young married couple, wanted to keep to ourselves.

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It’s only natural that most couples wish to keep their decisions on family-planning a secret. Okay … maybe not so much a secret, but more of a discussion that happens strictly between the couple.

After all, it really should be no one’s business to know what’s going on in a couple’s sex life. Right?

But what happens when love and marriage don’t automatically lead to the proverbial baby carriage? And what if months — nay, years go by without having anything to show but a garbage full of negative pregnancy test?

What if you had spent thousands of dollars for an infertility diagnosis and work-up? And then turned around and spent even more money on trying to “fix” the medical problems so that you could produce a biological child of your own?

Should a couple still keep their family-building plans and the infertility diagnosis a secret?

What if you and your spouse had to continuously be poked by various needles and prodded by various health professionals, month after month, just to determine when the optimal time was to reproduce? To go home and have a romp in the bedroom (stress-free, of course)? To collect a man specimen in the comfort of a sterile clinic? To have to sit nice and pretty in those G*d-awful stirrups? Only to be disappointed month after month …

Would it still be inappropriate for a couple to talk about how infertility has affected their lives?

What if you or your spouse were done pursuing the medical route of infertility and decided to adopt? What if you spent an additional thousands of dollars in order to be scrutinized by adoption agencies, local and federal government officials? Just so these agencies can determine if you were “worthy” enough to be parents?

What if the Birth Mom/Family decided to change their minds at the last minute? Or what if the country you decided to pursue an international adoption decided to close their doors on all adoptions?

Would now be a good time to talk to loved ones about infertility?

And finally, what if you and your spouse thoughtfully and thoroughly considered all your other options to build your family … and after years of disappointment and heartache, decided that living child-free was your best path in life?

Would it be okay for the couple to comfortably discuss this decision with any random stranger who asks if the couple has any kids?

These are difficult questions to answer. I know; as I’ve had to dissect each individual question with a fine-tooth comb. I’ve had to determine how each answer would affect the rest of my life and my relationships with those I’ve felt close to at one time or another.

The truth is, each person … each couple and/or the family & friends that are affected by this couple’s infertility … will have different answers. That’s because each person’s journey through infertility can be different than the person standing next to him or her. Even if they were sitting next to each other at an Infertility Specialist’s office.

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I find it sad that society deems “family-building” discussions as a private issue amongst infertile couples.

Okay, let me reword that last statement: I find it disappointing that society deems “family building” discussions as inappropriate when it comes to Infertility.

While I do think that there are certain discussions and decisions that should be left private amongst the infertile couple, I do think that other conversations should be okay to discuss with other people … other family members and friends and other infertile couples.

Because if anything, Infertiles can be the worse when it comes to openly talking about their experiences and emotions when it comes to building their family.

There’s an article in SELF Magazine’s August issue that outlines this exact issue.

This article (aptly titled “This Woman Has A Secret”) found that a recent survey indicates that 61% of infertility patients hide their struggle to get pregnant from friends and family.

And seeing that 1 in 8 American couples experience infertility … well, yeah. That’s a lot of people that aren’t talking about the heady emotions that can be associated with the inability to reproduce.

Along with those questions I previously posed, other common concerns that an infertile couple can experience include the fear that their life will be eternally empty. Or the sense that the couple is damaged or broken.

Both amplify the shame already incurred by the couple; as they likely feel different from being different than other “normally reproducing” family and friends.

Both make the couple more embarrassed to talk about these struggles and associated emotions with their loved ones.

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It’s a difficult thing … wanting to talk about a person’s (or couple’s) individual journey through infertility. It’s ten-times more difficult, given the shame that’s associated with infertility.

As the SELF article points out, it gets even more exhausting when an infertile couple:

… become slaves of their monthly cycle; often unable to leave town even for a weekend getaway due to daily monitoring for hormone levels and egg counts. When month after month a couple fails to get pregnant, their lives stall and the question of whether or not their family will expand looms over decisions about the car they buy, the house they live in, the clothes they purchase.

And this, along with many other reasons, is why many infertile couples choose to keep their “family-building” struggles a secret. Why they continue with the facade that “family-building” discussions should remain personal, as society dictates.

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After years of keeping my struggle a secret … of burying the emotions I’ve felt for so long … I believe that it is extremely important to talk about these issues. And I think it’s important for an individual to find their own outlet or support systems.

But first and foremost, I think it’s very important to keep an open communication with your Spouse/SO. Because if there is anyone else who should know what you’re going through, it should be the person who is traveling down the infertility journey with you.

For Hubby & I, it’s a path that we took together, hand-in-hand. We made it a point to talk about each of our concerns openly and honestly (yes, even the scary parts) so that we knew where we both were at emotionally. And if one person was even slightly ahead of the other person, we’d make an effort to “wait” until both of us were both “on board” before making any major decisions. There was no pushing or prodding; there was patience and understanding that both of us dealt with our issues in very unique manners.

If anything … that was my saving grace in our journey together. Hubby was my rock — my torch, so to speak, lighting my way through the darkness. And I hope that he can say the same thing for me as well.

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As for other support systems outside of the couple … It’s difficult to find support out there. I know; I’ve tried.

I’ve sought support amongst my loved ones; my friends. But it’s honestly hard for them to completely understand what it’s like, unless they’re walking in your shoes, your path.

But after years (and years) of dealing with Infertility, I’ve finally learned to turn this experience around by educating others about my journey. And I did this by debunking statements (like “just relax”) and myths (like “just adopt and you’ll get pregnant”) whenever they would surface in those inevitable conversations.

This is because I believe that the more an Infertile person openly discusses their experiences, the more that the general population will understand and learn to empathize with the Infertility community.

I hope that this is a lesson that other Infertile couples can learn from my own experience: Talk openly about it now, so that others can be more empathetic to the Infertility path.

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I’ve also tried to find support in an Infertility Support Group.

For me, that was not my cup of tea. My experience mimicked how another person in the SELF article so aptly stated, “Everyone gets up and tells their success stories. Infertility treatment isn’t always about success.”

But … that may not be the case for every support group. So please … you should still seek out an Infertility support group before passing any judgment. It just may just be the perfect outlet for you.

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Finally, (and only after a major catastrophic life event) I tried some individual counseling. And that planted the seed that allowed me to talk about my Infertility and the emotions that came with those struggles.

My advice for an Infertile person trying to find the right therapist? Talk to your Infertility Specialist and ask for a recommendation. If you’re not currently seeing a specialist; call one in your area and ask. Chances are, the Front Desk staff or the RN in the office will be more than willing to give you a recommendation. If not, check out RESOLVE’s website for a list of professionals in the area.

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There’s one more outlet for support that I want to point out. And this outlet, I must say, has been the most therapeutic for me.

After much encouragement from my therapist, I sought out support from online communities. I started out by reading message boards and eventually sought out personal blogs. From there, I stumbled onto Mel’s list and found an entire blogosphere of people that I suddenly felt I could relate to.

Suddenly I wanted to share my story. I wanted others to know what *I* had gone through in my journey. And, because there wasn’t enough representation from the Asian-American/Filipino-American community, I wanted to let those Infertile individuals/couples know that they weren’t alone.

And, as the Asian-American culture typically simultaneously praises Motherhood and yet frowns upon discussions leading up to Motherhood, *I* wanted to have an outlet for where I can point other family members and friends to read when the inevitable, “What? You don’t want kids?” questions came up.

The support I’ve received from the three years I’ve now been writing on this blog have been overwhelming. Not only have I met the most incredible people who get me (and understand my wacky sense of humor), but I’ve found support in old friends and family that I might never have found any other way.

So yes … if anything, I encourage writing a blog as an outlet for your Infertility issues. I encourage you to write about your struggles, your emotions … your biggest fears and worst nightmares and post it for the world to see. I encourage you to be honest, as well.

But most importantly, I encourage advertising it to your friends and family. Because we all know that keeping secrets from your loved ones (whether big or small) can ultimately be frustrating and tiring for all involved.

So why not let the secret out?

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I write this to let other Infertile couples know that they do not have to suffer through these struggles alone.

I write this to encourage other Infertiles to talk about their experiences to others.

And I write this to ensure that those now-parents – those who suffered through Infertility on their way to parenthood – continue to share their struggles of Infertility … regardless of how busy their lives may be, now that they have children.**

I write this to make sure that Infertility no longer remains a secret.

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Related Posts:

A brief history of Emily’s Infertility Journey

When Emily decided enough was enough

Why Emily blogs for Infertile Asian/Filipino-Americans

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** This was the only beef I had about the SELF article. For all that it said about the importance of “letting the secret out,” the last sentence in the article is what soured me the most:

Working behind the scenes [of supporting the Infertility community] is one option, but [Lisa] says, ‘I’m sure my volunteer efforts will be for schools or parks. Once I have twins, I’ll have a lot less free time.”

You are missed every single day.

And just a reminder … this week is National Infertility Awareness Week: