The Persistent Infertility Advocate

In the past couple of weeks, I’ve been teaching an “Empathy and Empowerment” presentation about how to support, relate and assist infertility patients on their journey. Yesterday, I spent a good portion of my day doing these sessions that includes many different elements of empathy, how to support and be sensitive to someone dealing with infertility and I include a list of things to NOT say to those going through infertility treatment (i.e. “God has a plan, be grateful for what you have, maybe there’s a reason, don’t give up, etc.) I also get into making sure that patients feel empowered to take an active role in their fertility treatment decisions (we tell people about the success rates of IUI versus IVF, etc.) I take great pride in not only making the “fertile world at large” aware of the impact infertility can have on an individual or couples life but also, how they can help not say something that will get them punched in the face.

As I headed home at the end of the day feeling positive, I got a comment on my blog from someone who called themselves, “Unknown”. It said,

“I have ready many of your posts as well as your piece on Recombine’s site. There are a few different definitions of Infertility but bottom line is that one who is truly infertile cannot conceive. You have two children. Can you really speak for those of us who are unable to have children? You say to find humor in it, I haven’t yet.”

To be blunt, my first reaction was annoyance as I felt like someone just pooped on something I’m passionate about. However, I decided to practice what I preach, be empathetic and publish the comment so I could respond. However, when I went Blogger to approve it, the comment disappeared. I have it in my email which is why I’m able to still have what it said. So I’m writing this post to share it (as this person clearly did want this to be shared/read) but also because I’d like to address it.

First, to “Unknown” directly: I’m so very sorry to hear things have been unable to conceive AND that this has been so tough. It’s not fair, it makes little sense and I can’t even imagine how incredibly frustrating this journey (or rollercoaster) has been for you. I thank you for bring this important point up and for your honesty.

Second, I’m going to try to explain why I remain an infertility advocate despite the fact that I do have two kids. Please know that this is something I even asked myself and even went through a period where I struggled with how to proceed in the infertility world so I’m happy to share my reasoning.

There’s a well-known and vocal infertility advocate named Carolyn Savage who I’ve had the honor of connecting with. When I was pregnant with my second child, I asked her about whether anyone who had kids could be an infertility advocate. She said to me, “Of course. That’s like saying anyone who survived breast cancer can’t be an advocate for it.” That resonated with me… but still I grappled with my advocacy role.

After a few weeks, something hit me that changed my mind and has kept me going since. When I was deep in the trenches, I was EXTREMELY private about how I couldn’t conceive. It was several years of not telling my family, friends, and co-workers. That’ why I started this blog. To privately have an outlet because I felt so guarded and quite frankly, ashamed. I felt like a huge failure and literally every time I’d get my period or fail an IVF cycle, I’d spend days in bed not talking to anyone being depressed.

If any of you know me (and some do), my guess is you’d describe me as boisterous (i.e. LOUD! ), outgoing, jokey and hopefully, good hearted New Yorker (but not as rude). When I was going through those years of treatment though, I was not any of those things. I avoided social situations, distanced myself from friends who had children or who were pregnant and stayed home silently wondering what was going to happen, how I was ever going to pay treatment or how I could get out of any event where someone was going to ask me why I don’t have kids yet.

Now here’s the thing “Unknown” – Right now, there are many, many people in the position I was in then. They are private about their struggle, they are perhaps depressed, they are not their usual selves, and they too feel like they can’t be open about what they are going through. They don’t want to share their story because they are understandably protecting themselves. Perhaps that’s why you even used “Unknown” and not your real name, which again – I understand.

For me though, its years later and I’m in a place where I can raise awareness about infertility, share my story, write for (as you mentioned) Recombine, Huffington Post and Time Magazine about infertility rights and coverage. I can go on CNN or go to Washington, D.C. to talk to Congress about increasing fertility coverage for those, who like me, had none. While someone is somewhere at home dealing with this journey, I’m putting myself out there, using my real name where everyone (family, friends, foes, the public at large, etc.)  can support me or judge me, judges what I’m saying and in the case of some of my Huffington Post pieces, make comments like, “It’s selfish to do infertility treatment. Just adopt.” I do this though to speak for those who currently can’t. My goal is make this medical diagnosis known, to raise awareness, support and real benefit coverage and in the process, raise the level of sensitivity around the topic.

I also know there are many like me in the infertility community who do go on to have children that find themselves in a tough spot. We were formally diagnosed with infertility. That was three doctor’s opinions in my case – I have poor egg quality and infertility and that was certainly the CPT code used on all of my medical treatment. However, the debate remains that if you do go on to have children, even if it is, in fact, through fertility treatment, are you still considered an infertile? I hope you’ll all weigh in on that in the comments section as I know there are varying opinions on this.

On this note though, what I would like to ask Unknown is would it be better if I was active in the infertility community and then as soon as I had kids, I left and said, “Ok, thanks! Bye!” To me personally, that’s worse. The community supported me when I needed it and now it’s absolutely my turn to support those who need it. Whether you think that’s wrong or right, I don’t have it in my heart to just peace out like that.

Also, on the note of humor, I volunteered for several years at Gilda’s Club. As you may know, Gilda’s Club was named after Gilda Radner, a very well-known and respected comedic actress who was diagnosed with Ovarian Cancer. Her husband, Gene Wilder, who also just recently passed away, said that Gilda Radner kept her sense of humor throughout her grueling treatment and right up until her death. When I volunteered in “Noogieland” which was the children’s department, one of the main overall objectives was to use humor as a coping mechanism. It doesn’t dismiss the horrible issue you’re dealing with but it can help buy you even moments of sanity. It also, I hope, takes away infertility’s power… to make fun of it and show, “I can laugh at you so f*ck you!” I’m certain not everyone sees it that way but given your options, laughing at it or letting it kill your sense of humor, I’d suggest trying to laugh at it every time.

Here’s the bottom line: Anyone who wants to be unhappy with me, my journey, and my sense of humor absolutely can. I’ll even connect you with a few ex-boyfriends if you’d like to talk smack about me. You can hate that I did end up having children as quite frankly, I can imagine that I might feel similarly. What I can only hope though is like me or not like me, you still see that I am doing all I can to help bring attention to this issue that affects one in six, and somehow do my part to help make things better for those who are going to go through treatment or for those going through treatment right now. I would hope that even if you don’t like me or get me, you’d at least respect that.

All of us, whether in the infertility closet or not have the power to make a difference. Whether we send a letter to our local Senator or HR Department about the importance and need for fertility benefits, whether we create an anonymous profile on Twitter or FertileThoughts or any other support forum you like to help support and share information with others or even if you educate just one person about infertility – that it exists, we all can be an infertility advocate in a way we choose and that we feel comfortable.

So, Unknown – I do have children and I apologize if that or my sense of humor has hurt you in anyway. If you at all feel comfortable though, I’d encourage you to do something that does make you feel empowered by helping the cause. I will never stop being an infertility advocate. Instead, I hope you join me and become one as well.

ST. GERARD TO PROTECT PREGNANCY, FERTILITY

No matter what your religious beliefs, it can be comforting to pray to particular saints who are known to help with difficult situations or who will help protect.  Saint Gerard is known not only as a saint for infertility, but also a saint to help protect pregnancy and motherhood.  My site has a page devoted to prayers to St. Gerard and Our Lady of Perpetual Help.

The F in IFAdvocacy is for Funny

I’m typing this out while on an Amtrak train back to New York from Washington, D.C.. To be clear: I’m exhausted at the moment so I hope to heavens this makes sense. I’m still so inspired by this year’s Resolve’s Advocacy Day that I had to type something! I do also plan on writing a piece about it on The Huffington Post but there, I tend to be a bit more formal to appeal to the non-infertility related world in the hopes that my message will go beyond “the community”. I’m not sure if it’s working as still, so many in power think, “Meh. Infertility doesn’t affect me. Therefore, it doesn’t exist.”

But I’m still talking, writing, tweeting, etc. 

As some of you know, I’m a diagnosed infertile who went through several years of treatment and IVF’s who now has a four year old son (my lone embryo on my last IVF) and a 10 month old son (who was a complete hail Mary total shock of a conception). I also am the Director of Patient Care at Progyny, who works with both patients and employers who want to pursue building their families in an attainable and educated way (translation: make it possible to afford it and fully be up to speed on all of the latest science and technology). 

Bottom line – I’m all about infertility/fertility all day and all night. No matter that I now have children, I know there are SO MANY still trying to conceive who don’t feel comfortable coming out of the infertility closet and for them, and I continue to be loud and outspoken.

I know I’ve talked about this a lot on my blog but of the many things I was reminded of at this year’s advocacy day is having a sense of humor. When you hear statistics, the lack of coverage, how little regard our government gives to wounded veterans that need fertility assistance, that insurance companies still don’t get that infertility is a medical diagnosis… dear god, if you don’t make a joke on occasion, I think you’ll lose your mind.

I’m not saying to make light of these issues. I’m just saying that an occasional joke can remind you that even though this shit is hard, if you can laugh at it every now and again, it won’t break you.

If you go through my blog or hang out with me, I could tell you a million funny quotes and anecdotes that are all fertility related. The time someone asked if there was a way to put one sperm in her so she wouldn’t have twins (oy), the time a friend said she thought implantation was a field in Georgia, the time my husband did a full review of the porn at various clinics (note: National Geographic Magazine does have boobs but it also has starving children thus killing the mood) but the question really is do you have those moments where you can make it all funny? I can do my level best to make you laugh but can you make yourself laugh even through the hell of Clomid and having a needle in your vagina?

One of my favorite stories is actually one of the worst moments in my life. It was because of something my husband said that made it funny. It was the morning we were waiting to hear our fertility report after our third IVF retrieval. We retrieved the most eggs I have ever had – 13, we spent our entire savings on this cycle and in our mind, it was our last chance. The day before our retrieval, we were given very specific instructions on where to give the HCG shot and more particularly, how my husband should wash his naughty bits to ensure his sperm was clean and arriving shiny and golden. 

When I got that call that despite the amount of eggs we retrieved and all of our money being gone, we only had one embryo to transfer. We were devastated. Yes, all you need is one but we paid for more and this was our last chance. I could barely speak when I told my husband the news. He took it in for a moment and you could feel the gravity of the situation. After a minute or two, he looked at me and said, “Well, at least I have a clean asshole.” Every time I think about that, I bust out laughing.

Luckily, very luckily, that one embryo was my son but at that moment when we knew everything was riding on him; our marriage included quite honestly, stays with me. And although my heart was breaking, that little joke bought me a good moment of sanity.
It may seem odd that THIS is what I would post about after Advocacy Day but after a day of begging Capitol Hill to please acknowledge our existence, I couldn’t help but feel a little post about humor was in order.

One thing I WILL say though is the NY Crew did sort of gently and lovingly tackle Senator Chuck Schumer. His daughter recently got married and he’s already looking forward to being a grandfather. In the past, from what I understand, he hasn’t been the most supportive of fertility issues. Now that he wants his daughter to conceive, one has to wonder if his daughter will have any issues conceiving… because there’s a one in eight chance she might, which would suck. And while I truly hope that doesn’t happen, the reality is it might. I don’t know of a better way than advocating and using humor (and our voices) to get that across to those who can make a real impact.

So that’s my post on the subject. Once I get more sleep, I’ll write my Huffington Post blog where I’ll try to sound intelligent. God willing, I’ll also have the wherewithal to sneak in a pun about my uterus. We’ll see.

START ASKING: For Infertility Awareness Year Round

Yesterday, I had the great fortune of having a blog piece posted on The Huffington Post about #NIAW. It’s called, “National Infertility Awareness Week: Changing the Dialogue". After years of writing posts here on my personal infertility blog, I wanted to try to write something more “fertile public facing” as a subtle clearing of my throat to say, “Ahem… really though fertiles! It’s National Infertility Awareness Week. It’s about making YOU aware. Us infertiles are already more than aware how much it sucks.”

I’ve got to tell you though: Even though I haven’t been writing here often at all (which frustrates me more than you know), a day doesn’t go by when I’m not talking infertility (whether people want to hear it or not). One of the biggest highlights bringing the issue of infertility to the public at large is the recent premiere of HAVEABABY. It’s impossible to overstate how proud I am to be involved in this powerful documentary that is a raw, honest look at the costly and emotional rollercoaster those struggling to conceive go through. Click HERE to see the trailer.

It’s also yet another example of RESOLVE’s out of the box thinking to reach and educate others who don’t understand the plight of infertility. They partnered with the HAVEABABY team to help promote the film… and of course, awareness.

I’d like this post here on my blog though to be more to those who know all too well the sting of being reproductively challenged. This blog, The 2 Week Wait, has been my support group for many years, has seen me through dark times, has given me an outlet for both my sense of humor and sorrow that I felt when failing to have children and it has connected me to so many amazing men, women, couples and family building groups. Even though, again, I don’t post on here often, this blog will never stop meaning the world to me. This is why I come back here this week to aim to raise awareness AND to ask you to “Start Asking” for more.

To any of you who have been touched by infertility: It does not matter where you are in your journey. We need to stop feeling embarrassed or less than for having fertility issues. No one apologizes for having medical issues, why should we? Yes, it’s difficult to out ourselves. (Man, is that an understatement!?!?) And yes, we open ourselves up to stupid advice. ("Why yes, I did try cough syrup to help my cervical mucus. Thanks!") But until we overcome our shame and advocate for ourselves, few others will. That is a painful, ugly truth.

One in eight suffer from infertility. If the one stays silent, the other seven will never know or understand that pain. We must not stay silent. I know it’s so personal. I truly do but until we start asking to be noticed, recognized and acknowledged as a medical issue that employers and insurance need to assist like they do any other disease, we will continued to be ignored.

I’ve said this often on Twitter but the movie MOTHER’S DAY opened today – during National Infertility Awareness Week. Take Your Child to Work Day was yesterday. Is it me or does the public at large still not seem to get it? I don’t think it’s being overly sensitive to recognize what this week is supposed to be about and you’d think the marketing team at Open Road Pictures would have looked into it.

My point is PLEASE – Start Asking for awareness year round. When someone asks you why you don’t have kids, ask them if they’ve ever heard about infertility issues and then educate their fertile and innocently ignorant selves.

Start asking your HR department for coverage. Start asking your relatives for support. Come to Advocacy Day and start asking your lawmakers for help. Start asking your co-workers, friends, family and government for respect. Any opportunity you get, start asking for more.

Yes, it’s National Infertility Awareness Week but we need to start asking for true awareness of this painful, emotional, psychological issue so that this week won’t be needed anymore.

As always, with hope, humor and hugs.

Infertile Male

Infertility in men is about as common as infertility in women. Infertility is described as the inability to conceive after one year of sex without using contraception. If age is a factor, then you may want to consult a doctor or infertility specialist after about six months of trying, since fertility declines with age. Some causes of infertility can be harder to treat more they are left without intervention, so do not hesitate to seek advice early if you suspect that infertility may be a factor for you.

Many things can cause infertility in men. Disease, illness, injury, blocked fallopian testicles levels, diet, weight and activity are some of the causes of male infertility. The most common causes of infertility are low sperm count, the dysfunctional or immobile sperm, and delivery of sperm impaired. Men can be born with one of these conditions may develop later.

To determine the cause of infertility in a couple, man and woman must be examined. The male infertility examination procedures are generally simple and non-invasive. Your doctor will check for sperm production, irregularities in the testes, and hormonal imbalances among other possible causes. A semen analysis will tell if the ejaculate has adequate seminal fluid to allow movement of sperm. Sperm sperm count, sperm shape and structure, mobility and the total volume of the amount of fluid and seminal ejaculation is checked.

If no sperm in the semen, then it is called azoospermia. This may be caused by a defect in the testes or of a possible blocking in a duct needed to effectively provide sperm in the ejaculate. If the sperm is present in the fluid, it is examined for abnormalities. If a significant number of sperm are abnormal, they may be a cause of infertility. Your infertility specialist may wish to perform mucus sperm dosage interaction. This test will determine if sperm can live in and move through cervical mucus and thus, through the female reproductive system.

Your doctor may also perform a test for sperm penetration. This will determine the ability of sperm to penetrate the inside and the outer layer of an egg. Infection, sickness and disease are sought. These things can affect your testosterone and sperm production.

Almost half of cases of male infertility can be treated by assisted reproduction. Your infertility specialist will determine which treatments are best for you based on your situation. If there is a neurological reason that ejaculation can not be obtained, for example, a lesion of the spinal cord, then you may be a candidate for Electroejaculation. This process stimulates the body to excrete semen. If an obstruction, injury or deformity is present, a surgeon can sometimes retrieve sperm surgically going. Sometimes this procedure can be performed using a needle and does not require surgery. Sperm washing refers to the method that mixes with sperm washing medium and healthiest sperm is concentrated in an inert buffer flowing which can be used for intrauterine insemination, which increases the chances of conception .dropoff window

Talk to your doctor and infertility specialist about possible causes and treatments for male infertility. Remember that almost half of all infertile men can be treated and the design can be possible for you.

Eric Daiter is the medical director of the New Jersey Center for Fertility and Reproductive Medicine, LLC, a leading NEW JERSEY infertility center offers a full range of male infertility TREATMENT AND female infertility. For more information on the New Jersey Center for Fertility and Reproductive Medicine and Dr. Eric Daiter http://www.drericdaitermd.com visit