PLEASE NOTE: If you are struggling with infertility or are currently trying to conceive and you DON'T want to read about my pregnancy (which I totally understand), I recommend starting at the beginning of the blog (March 2010) and reading from there. I find out I'm pregnant in June 2011 so there is a lot of trying to conceive posts in between that you might find funny, helpful or relatable. Wishing you all the luck in the world!

Saturday, April 28, 2018

National Infertility Awareness Week (#NIAW): Putting the A in Awareness!

At Pregnantish Event
Every National Infertility Awareness Week, I typically end up writing two posts. One, at the “start” of the week of my initial thoughts and feelings and then one, near the “end” of the week of anything I learned or have been inspired by during the course of the week. This year, I must say, I learned more than usual.
 
As it turns out, I learned that “Flip the Script” is historically tied to Adoption. Two of my Twitter friends (@emoglasscase and @apluseffort) pointed this out and I genuinely hadn’t a clue. Here’s one post on Adoption and Flip The Script theme from 2014 from a blog called, “Light of Day Stories”, here’s a blog post from my Twitter friend from 2016 called, “Flip The Script” on adoption, and this is a fascinating video also made in 2014 where adoptees talk about what the adoption experience and narrative as well as what the phrase "flip the script" means to them.


Tote bag by Our Misconception
One of the reasons I’m sharing all of this is “Flip the Script” is being highlighted this week for infertility and adoption is often part of the infertility journey for many AND if “Flip the Script” has traditionally been part of the adoption narrative, it feels only right to combine the two and give a major shout out to it.
 
In the interest of being fair, many in the adoption community commented that Resolve having NIAW’s theme this year be “flip the script” this year was tone deaf and marginalized the adoption community. Other than being on the Resolve Advocacy Day Committee, I don’t work for Resolve but I have to be honest – I truly in my heart of hearts, don’t think this was intentional. From what I understand, several of the Resolve staff have even themselves have built their family through adoption so I can’t imagine they would ever set out to make anyone feel excluded. Obviously, I can’t speak for them (more on Resolve later in this post), nor would I imagine they would want me to but I can only say that I am personally am grateful to those who pointed this out. I read a Barbara Bush quote last week that put it best, “You get nothing done if you don’t listen to each other.”
 
#HaveAHeart from
IntegraMed

On that note, and unbelievably, during this exact week: Two other noteworthy things happened. A good friend of mine after several IVF plus PGS testing texted me that her embryos were genetically abnormal. Of all weeks, she happened to share with me THIS week that they are going to stop treatment. Two days later, another friend of mine who froze her eggs several years ago after being given a DOR diagnosis emailed that she if officially thawing those eggs to fertilize them to have a child on her own as a single mother. Two totally different outcomes/resolutions… all during National Infertility Awareness Week.

The point is, this is all the ‘A’ in NIAW: Awareness. We can’t raise awareness around infertility if we don’t try to respect and understand that part of that experience is also talking about surrogacy, donor eggs, donor sperm, donor embryos, adoption (domestic, international, and foster), male factor infertility, childless not by choice and more. It's VITAL to remember infertility doesn't have one clear path or just one outcome and we need to not only keep the conversation going but we also need to keep listening.
 
Adding my humor to PCOS Challenge
As mentioned earlier, I want to quickly say a few words about Resolve. Like any group or person that puts themselves out there in the public eye, people will have varying opinions, judgments, or criticism of them. This, of course, is to be expected and is completely fair. Lord knows people have had plenty towards me over the years and whenever it's occurred, I try and listen first to see if there's truth in it, if I agree and how to handle (not that I do this perfectly every time but this is the goal).
 
Resolve is one of the few (and probably one of the largest) not-for-profit groups however, that works 24/7, 365 days a year on infertility and fertility related issues. On their website, they cover every topic mentioned above and again, from what I understand, their staff is made up of almost every outcome there is (childfree, adoption, IVF, etc.) So, what I want to say is though I’m certain they don’t do everything perfectly and while they aren’t above criticism, I do want to thank them for their hard work and continued efforts.
 
Some other not-for-profit hard-working infertility groups that also deserved to be thanked are INCIIDResolve New England, Alliance for Fertility Preservation, Cade Foundation, Path2Parenthood, and PCOS Challenge. I know there are many other not-for-profit groups too in the fertility space so if there are others YOU’D like to thank for raising awareness, PLEASE mention them in the comments! I'm sure they are underpaid and overworked so my guess is they'd appreciate the gratitude.
 
As we close out NIAW, I ask (read: beg) you to revisit my post from earlier this week and consider either joining me and others at Advocacy Day or, at the very least, writing your lawmaker, representative, senator or HR department about fertility benefits. One of the MANY things I was reminded of for the umpteenth time this week was not everyone has access to fertility benefits or coverage. Treatment shouldn't just be for those who work for big companies or who have deep pockets. It should be for everyone who needs it.
 
I’d like to close out today’s post and NIAW 2018 with some of the posts I wrote for other places as well and thank YOU for reading:
 
 
  

Wednesday, April 25, 2018

National Infertility Awareness Week #NIAW: Flip The Script - A Call to Action




This is not going to be your ordinary National Infertility Awareness Week post. This is an official, raw, blunt call to action. I’m serious. I’ve had it. I’m officially getting fed up and I plan on putting the “war” in “Social Warrior”.

Let’s start with the beginning of this month, shall we? April 1st. Despite numerous warnings all over social media begging people NOT to post fake pregnancy announcements and memes stating that infertility affects one in eight, and how pregnancy loss impacts one in four, people still posted them including Bachelor Arie Luyendyk Jr. who pulled an April Fools' Day pregnancy prank. In addition, journalist, Marissa Miller, wrote an all-out distasteful piece for Elite Daily (she removed her name from it when she received backlash from the infertility community) about how she fooled her husband by saying she was pregnant when she wasn’t. In both cases, infertility was a punch line. For many like myself, it’s a reality. While we absolutely have a sense of humor about it at times, making our medical condition the butt of a joke isn’t particularly funny.

Research has shown that the stress levels of women with infertility are equivalent to women with cancer, AIDS or heart disease, so there is no question about infertility resulting in enormous stress, yet when there is push back on these jokes or pranks, we’re told we’re being “too sensitive”. Would someone who has cancer be told the same?

On that note, you know who is also not taking us seriously? Our lawmakers, representatives, government, insurance companies and employers. The World Health Organizations recognizes infertility as a medical diagnosis and yet in America, only FIFTEEN states offer insurance coverage for infertility treatment.

There are companies who are, simply put, capitalizing on the fact that infertility is not covered. They
are making money off of the fact that our medical issue is considered “elective”. Fertility treatment is roughly a 7-billion-dollar industry and entrepreneurs have taken notice of this. Companies are seeing there is money to be had and that desperate people are willing to pay anything for just a chance, not even a guarantee, but a chance to maybe have a child.

TO BE CLEAR: I’m not saying all of these companies are evil or ill-intentioned. Some of them are trying to fill a gap, some of the founders have even gone through treatment themselves and some of them even contribute to helping advocate on behalf of the infertility community. But let’s be real too: Some of them don’t give a damn.

I’m on the board of the Advocacy Day planning committee this year and on one of the early calls, I was saying to the group that to me, “Flipping the script” means that on May 23rd, it’s the one day WE GET TO SPEAK FOR OURSELVES. Us. Not the people who think fake pregnancy announcements are funny. Not the companies. Not the lawmakers. Not the 7 of the “1 in 8” but US. The 1’s (if you will). Flipping the script is owning the conversation so we represent ourselves and get the message we need to get out that really, infertility is a medical issue and NOT a personal failure. We need medical care or access to family building options.

And in the sprit of “flip the script”, owning the conversation, and how I started this blog post of being fed up – I need to share with you that I can’t believe I’m going to advocacy day again this year to be like, “Hi. Me again. Asking for the same thing I’ve been asking for the past five years. Please take infertility seriously. I have friends who are about to do their thirteenth IUI that isn’t going to work because they can’t afford IVF. They work for a company who only has 200 employees, so any company that offers fertility benefits won’t work with them and they are in a state that isn’t mandated, soooo really, could you possibly help????”

I know it’s hard to come out of the closet and speak for yourself. Many who deal with infertility stay silent due to feelings of failure, embarrassment or shame. I know this because that is exactly how I was. I was absolutely terrified people would know I couldn’t conceive on my own. Yet, as long as we stay silent, as long as we don’t advocate on our own behalf to lawmakers, our HR department or even to our friends and family to educate them on the fact that infertility is an actual medical issue, it will be “the 7” not impacted by infertility that will control the conversation.

There is no shame in having diminished ovarian reserve, a sperm quality issue, a genetic disorder, blocked fallopian tubes or recurrent pregnancy loss. Any medical reproductive issue does not define your womanhood or manhood just like being diagnosed with diabetes or epilepsy doesn’t define who you are as a person.

As I said, this is a call to action. If you can’t “come out of the infertility closet” or even if you can but can’t make it to advocacy day, PLEASE write letters to your lawmaker, state representative and/or your Human Resources department. As melodramatic as this sounds, YOU ARE A HUMAN BEING WITH A MEDICAL ISSUE. If we don’t start believing that, owning that, explaining and educating others on that, we’re never going to change others thinking. We just can’t continue to let “the 7” do the talking. Please, “flip the script” with me. Let’s make THIS the year we see real change.