Thursday, August 28, 2014

5 Ways To Inadvertently Hurt Your Infertile Friends

Infertility often feels like an Iowa winter...cold and never ending
*Hence the seemingly random photo*
This post has been mulling around in my brain since I promised it sometime last week. My hesitance comes because I don't want to offend those who may have inadvertently said something that I found hurtful -- especially because I know ironically the intent was usually an attempt to be kind. Obviously, these comments come from somewhere and they may have come from you, dear friend/reader. Remember how I have been guilty of some of these same comments myself? With that said, I rarely find offense in these comments but they still remain difficult to hear. So maybe in sharing we can all have a little more direction in what to say when we feel at a loss for words.

So without further delay, here is the list of my most frequently received hurtful statements, otherwise known as...

5 Ways To Inadvertently Hurt Your Infertile Friends:

"You aren't infertile..."
I think as women in particular, we have been trained for these kind of conversations. "No honey! I don't know what you are talking about, those jeans look great on you!" Unfortunately, trying to convince me I am not actually infertile, I just need so more time, or I'm doing something wrong somehow, doesn't have the same effect as trying to convince me I really don't look fat in these jeans. No matter how much you argue, it doesn't change the fact that I can't get pregnant. I know and live on the hope that maybe it will happen some day but I accept my infertility. It's okay if you do, too.

Rather than try to convince me it will happen, it would be nice if you'd just let me vent awhile.
"I can't imagine anything worse/harder/more awful/heartbreaking..."
I find it surprising how many people tell me how sorry they feel for me. They commiserate or even congratulate me for going through what they often say must be the worst possible trial. 

I can't help but wonder, "Really? Worse than my friend who lost a child? Worse than another battling cancer? Worse than that patient in a coma with permanent brain damage? Worse than victims of abuse or violence? Or with no place to live?" The list could go on and on. For me, this particular comment makes me feel broken or shamed. Is my life really so bad that everyone is feeling sorry for me? Is my life so defined by my inability to have children that people would wish any other ailment upon themselves than have to go through what I am experiencing? Are people whispering as I go by, "Oh there's Erin. She's infertile (with a shudder). Poor thing!"

This is perhaps supposed to be a comment of the utmost support and empathy, but for me it is hard to hear. My life is pretty great. For now, I am living with my infertility. It does not define me. It is an interesting aspect of who I am and my life experience. I know that if we have children it will be a great blessing. And I also know that if we never do, we still have a great life.

So you don't need to feel sorry for me. It's not like I have leprosy. Just uncooperative ovaries.

Ironically, the opposite sentiment can be just as frustrating:

"You can just..."
If you ever find yourself saying anything starting with the word, "Just" make sure you turn right around and stop what you are about to say.

"Why don't you just...." is one of the most frustrating comments I receive. Unfortunately, most of the "Just do" suggestions are anything but "Just."
It is especially hard to hear "Don't worry, you can JUST adopt or JUST do IVF."  when facing thousands of dollars of investments, no guarantee of results, and potential complications. How do you feel about JUST giving yourself multiple shots per day, JUST putting yourself at increased medical risks, and JUST coming up with $25,000 cash? Or JUST waiting day after day to be selected to adopt only to find out it didn't work out after all?

Dealing with infertility is difficult emotionally. I think I have been shielded from many of these emotions (so far?), but sometimes the infertile couple may JUST need some time to process the emotions. To mourn the very real feeling of loss knowing they may never become a parent, anger over going through something so difficult when it comes so easy to so many, frustration after months of trying and suffering through medical procedures and tests, or fear and anxiety what they are trying may not work.
"You must be so..."
Many people assume they know what I am going through. They tell me how hard it must be to see other women get pregnant and have babies. They assume I am jealous or angry or devastated. They awkwardly avoid telling about their pregnancies or their children. And in conversations they sometimes comfort me for the wrong thing or empathize for the wrong reason. I have been lucky to avoid many of these common emotions of infertility but I also have my own feelings of anxiety, frustration, anger, and sadness that maybe you don't understand.
We unfortunately are not good mind readers, so the best way to empathize I think is to listen without making assumptions.

"You should ...."
There seems to be that inevitable desire to offer unsolicited advice. Unfortunately, what worked for you or your cousin-in-law or a woman you once worked with won't necessarily work for me. Encouraging infertile women to de-stress is good advice for anyone, but I don't think it will help me overcome my syndrome or help my friend suddenly grow more eggs. Herbal remedies may be helpful but don't be offended if I prefer to take my medications instead.
Luckily, I have my doctor to help me sort through these issues and offer most of the advice that I need.




What should you or can you say?

Sometimes you just need a friend

or your family to put on their coats and walk with you!
  • Wow, this sounds like a lot to go through.
  • Is there any way I can help?
  • I am here for you if you need someone to talk to.
  • I know I probably can't understand but I am willing to listen.
  • Do you need someone to come with you to your appointment?
  • What does your treatment entail? 
  • How are you feeling?

Unfortunately, as you can see I have a lot less to say about this. But actually, I think that is perfect. Because really, the best thing you can do is probably stop talking and just listen.

Let us know you are there.
Let us know you are listening without judging.
Let us know you care.

Not everyone is ready to talk but when they are, they will appreciate having a kind ear to hear.

Thank you!

Monday, August 18, 2014

More notes on infertility

Opening up about my infertility was the best thing I ever did. The shame was suddenly gone. Instead of the annoying and frustrating questions and suggestions about why or when, I started receiving little nods of encouragement, hugs, and suddenly, privacy! Suddenly, asking came with an apology or an embarrassed backpedaling, ("I'm sorry, maybe I shouldn't ask"), when it came at all.
Others started sharing with me their own struggles. It has been therapeutic to realize I am not the only one going through this, although it can be very isolating at times and it often feels that way. I have been made aware that there are many around me dealing with similar issues, struggles they too have faced in silence or alone, of which I was unaware. I have friends who worry as they race the biological clock to find a spouse, wondering if it will be too late to have children. Others have undergone rounds and rounds of fertility treatments without success and can't emotionally or financially afford to continue. Some have children of their own but hurt for the desire to have more, only to feel misunderstood and alone as many people assume they should be happy with the children they already have. Still others have lost children during pregnancy, and many have lost children after birth.
Doesn't baby looks good on us?

Even those going through similar challenges don't quite understand my experience. And I don't quiet understand theirs. But after sharing, instead of feeling alone, I feel supported by a large group of people (including those with and without fertility issues) who finally get it. They are rooting for me. They may be feeling sorry for me. But at least they (somewhat) understand now. 
* * *

I have also received a lot of compliments about my bravery for sharing; my courage for facing this trial.

Am I courageous?

I don't know. I kind of feel like I am just living. The same way people would ask how I do it in regard to my job, my response is the same, you just do. What other choice do you have?

Does talking about it make me brave?

I almost feel like not talking about it was harder for me (I do have a tendency to overshare). But realizing I have put it all out there online has given me moments of nervousness, usually right after posting and wondering if I said something wrong or inaccurate or just plain maybe?

Does going through it make me brave?

There are plenty of others as I said before struggling along with me. I don't think I am any braver; but I did decide long ago, even before trying for children, that I would not let me infertility define me. I've been lucky so far.

Hello, my name is Erin. I am a happy wife, surgeon, daughter, sister, and friend. Oh, and I can't seem to have children...yet.

So yup, I am pretty great (can you sense my half sarcastic smile here?)! I appreciate the kind comments from people telling me I am ( I know, I know, I would make a great mother one day).

But, I was also given a painful wake-up call by someone close to me when she informed me that during her own battle with infertility I was less than supportive to her.

I was surprised and sad that she felt I was not there for her when she needed me most.


After I stopped feeling sad and like the huge hypocrite I try desperately not to be, I gave myself a break: I now see that without experiencing infertility for myself at that time, I had no context to be a support. I just plain didn't know what to do or say. Ironically, I even thought I was being helpful and supportive -- giving what I thought was helpful advice and encouraging statements.

This is an important reminder when I think on comments I have received from those around me who are trying their best to be supportive and understand. Just as I laugh out loud at the sheer amazingness that people *accidentally* get pregnant, I am sure the inability to conceive is equally as difficult to imagine for them.

With that context, I thought I would share a little more about ways you can be supportive as you search for words to encourage your infertile friends...Surely, you have them as about 10% of couples struggle with this, and unfortunately, often in secret. If they decide to open up, I have some thoughts on some ways you can respond.

But there is a catch. You'll have to wait because I really should be in bed!


Wednesday, August 13, 2014

My amazing ride

Does anyone else think It's a Small World is a total snooze?
My last post was written months ago. Thankfully, I am not currently feeling those emotions. In fact, I feel quite calm and satisfied with my life. I am enjoying my new job and my relationship with my husband. We have some upcoming trips, I am working on some personal goals, and I feel like I am getting my life back after residency. I appreciated all of the responses from friends and family (and even strangers) from afar both in time and location, with posts on my blog, Facebook, and even personal messages. I especially appreciate those who opened up to me about their own struggles. It really feels like a smaller world, after all.

Infertility straps you into a crazy roller coaster ride of emotions. A really long one with big ups and downs. I think it is hard to understand if you haven't been on this ride before. So...

I thought I would share an abbreviated (although still quite long) version of my ride for those seeking to understand (maybe to support a friend or loved one--maybe me!) or to compare if you are on the ride yourself. I write in the "you" voice to maybe help you imagine better for yourself.

I would love to hear if anyone has had a similar experience of if these feelings are exclusively my own.

* * *

In real life, I like roller coasters. But after a long day of amusement park rides, I find myself home in bed with my room spinning and feeling like I never stepped off those crazy loop-d-loop rides or spinning cars. Infertility is a bit like this. Sometimes you wonder if the ride you are on is even real. Are you just imagining it? Could something really be wrong with the body you always thought was so healthy? Are you sure it isn't just timing or stress or (fill in the blank)?

The decision to try to get pregnant is a hard one. You feel nervous. Is it the right time? How will you make it work? How will it change your life? You are nervous but also excited. It seems like the right time. You feel ready to be a parent, and more importantly, your spouse would be fantastic at it. You expect to get pregnant right away. You stock up on pre-natal vitamins, and actually take them. You are almost nervous thinking it could happen so fast.

Then it doesn't.

Each month you start by waiting (anyone who has been to Disneyland knows this is a big part of the experience of an amusement park). You wait patiently (or maybe not), telling yourself this may be the month. You may even start feeling symptoms (I'm not feeling very good, is that early onset morning sickness? My chest hurts, was that from lifting at the gym or am I pregnant?) and you start to get your hopes up. Finally, about a day before you should know on your own, you break open that package of pregnancy tests. You know, one of many stashed in the cupboard. This time you hope it will be the last and you will have to figure out what to do with the rest that are no longer useful. You nervously take the test and wait the 3 minutes, and then the 10 (just in case). You wonder how you will tell your significant other the good news. And then you start to talk yourself down. "No, it isn't going to be this month. Why would it?" And sure enough, you throw the test in the trash. You casually tell your spouse sometime over the next few days, "Oh, yeah, the pregnancy test was negative."

At first you are disappointed. It is hard to wait another month but you remain optimistic. After months of this, it becomes normal to throw the test in the trash and continue with your day with only a few moments of reflection on the associated frustration, disappointment, or sadness.

And then maybe you start to feel relieved. At least I did...You try to convince yourself how it just "isn't the right time." You tell yourself you like your life as it is and surely a baby would complicate the matter. Vacations would be hard. Money would become more scarce. Your body will change and that is a little scary. There are question marks about how to make "it work" when a baby finally comes. So, for now, waiting one more month wont hurt. Just that much more time for you (the highly lauded "me time") and to prepare.

When the time is right, you finally seek help from your doctor. They start by doing an ultrasound to check your anatomy. It isn't the fun kind when you are pregnant and they rub the cold jelly on your belly and you get to see the present inside. Unfortunately, it is a little more personal than that. You start to feel a bit like this is real as you lie half exposed in the cold room. This hard time getting pregnant maybe is no joke. Maybe something is wrong.

And then you start the medications. Just a little pill, clomid. Except they want you to start taking some other medications to make sure all of your hormones are even. Suddenly you are on metformin (usually used for diabetics) and synthroid (used in low thyroid patients). You feel sick nauseated almost every day and vomit multiple times a week on these new medications. People start to notice and start asking you if you are pregnant, when the baby is due, have you thought if you are pregnant?

And the clomid, it makes you a little crazy. You might cry at work in front of your co-workers when they tell you they added a patient on to your schedule suddenly. You feel embarrassed and like a crazy person. You don't want them to think you are emotionally unstable but you also aren't really telling people you are on medications or trying to get pregnant. It is still early on and maybe you shouldn't tell co-workers because then they will know you are trying to get pregnant and get worried about how you will handle your work.

And you start the cycle again. Except now you are hopeful. This medication has helped lots of women get pregnant-- and sometimes with multiples (which makes you a little nervous). Instead of the home test, you start having blood draws every few weeks (great when you are a needle phobic person like me). You are disappointed as you review the results and find you still haven't ovulated. They increase the medications slowly, month by month. You try to be patient as time ticks by. Even though you are trying to take it all in stride, on top of it all you are frustrated by the side effects of your condition which includes horrible acne and increased body hair. On top of your frustration, you feel embarrassed and ugly and you worry it has permanent effects like scars. You are told there are two options to treat these conditions: 1. birth control pills or 2. pregnancy. Neither seem to be a viable option.

They may even switch medications. And after months, they decide this just doesn't seem to be working. (At least you aren't vomiting anymore.)  The disappointment becomes even more real each month as the treatments that were supposed to make this happen don't seem to work. You start wondering what comes next. You start worrying about what comes next because it seems like a big deal.

You are finally told that in order to get pregnant you will need more invasive procedures. They could start with injections that could put you at risk for ovulating something like 8 eggs. If you do this, you can't get pregnant or you could have 8 babies. Or, you can go ahead with in vitro fertilization.

You never thought you would have to be one of the ones who did that! That is what other people that get whispered about ("Oh, so and so had to do IVF -- but now she has twins!") go through, not you. Surely you don't have to go through all of that craziness!

But, looks like you do. If you want to get pregnant. You realize IVF is no joke. It takes weeks and includes multiple medications and costs thousands of dollars.

You wonder if you even really want a baby. You ask yourself, "Do I want a baby at $25,000?" Or would I just prefer a new car? It is a funny question to ask, and you know the answer but...

Suddenly this feels real.

And you realize maybe you just need a break from it all. What a relief when your doctor suggests you go back on birth control for awhile.

You know you are taking a step backwards but you are relieved to step off the ride for awhile. All of the spinning and adrenaline, ups and downs, and nausea have taken its toll. You know you have the multi-day admission and will be coming back, but for now heading to bed to sleep it off sounds pretty good!

Sunday, August 10, 2014

It's a personal choice, really...except when it's not.

It's something I'm not supposed to talk about.

I'm not really sure why.

But it really feels like something I'm not supposed to discuss. And being an open person, that makes me feel a little weird. Especially when it is something that is so big and common, so I'm told, with one or two anecdotes -- so and so evidently struggles with this, someone my sister knows had that. But it is rare to meet someone who talks freely about it in the first person.

But I think it is time. Time for me to talk. I'm not sure if by doing so I defy some deeply seated social taboo, or if it is merely a result of a desire for privacy. Whatever the reason, I feel a little bit like I am doing something wrong in opening up. Like I should be embarrassed or more discreet. I wonder if I will regret sharing with the world, especially in this very private sphere.

But I am going to go ahead and say it:

I can't have kids.

At least not yet.

It is something I've always suspected. It is something I hoped I would overcome with a few simple medical prods. And it is something I continue to deal with. Like when my disability insurance refuses to pay for any pregnancy related injuries or illnesses when they normally pay for this in women without documented fertility issues.

I used to think I would have five kids. In dental school I was asked by a girl if I would quit working to have a family when I graduated. I told her that I felt I would want to continue to work, at least part time, and "Who knows! Maybe I can't have kids so I'll be glad to have my work." She scolded me for saying "such a horrible thing." I don't know why having a realistic intuition was an inappropriate thing to say, but she seemed to think so.

I have thought a lot about pregnancy. I have had a lot of fear. I think I was coming to terms with my fears (both of pregnancy itself and also the fear of maybe not being able to get pregnant) when I wrote my Blueberry girl post. It was shortly after that that we started trying for a baby.

Most of my married life I was shielded by questions, judgements, suggestions. I think it was pretty obvious that in my stage of life (residency), having a baby would be very difficult to manage. But as I get closer to the end, I suddenly feel like it is free game to discuss my reproductive status. I feel like I am bombarded with suggestions (this would be good timing for a baby), encouragement (it would sure be great to see some little Sheffields running around),  and questions (mostly, are you pregnant?).

I should probably feel loved that people are interested in me. And flattered that they think my genes are worth passing on. But it can be hard. Most of the time it doesn't make me sad or mad or frustrated. But it does make me feel awkward. And alone.

When I hear, "No kids yet? Hmmm...I guess it is a personal decision, really." It pangs my heart to think, "Well no, it really hasn't been my decision." When I am asked when I am going to have kids, I say something like, "Maybe after residency," but I am really thinking, "Maybe never." I am embarrassed when I find myself tearful in inappropriate situations (probably partly from the stress of disappointment after disappointment and partly from the induced hormonal surges), and frustrated that when I look in the mirror, I am plagued by the effects of my out-of-wack hormones wreaking havoc on my body -- acne worse than when I was a teen, for one. And the disappointment and worry of what comes next after taking 5-7 additional pills each day that still don't seem to be working. I feel alone that while I answer with a superficial polite response with a smile, inside I know the struggle I carry alone, or at least it feels that way much of the time.

I'm not sure what I am hoping to achieve by this post. But I am tired of hiding it. I am tired of trying to be brave and quiet. I am tired of feeling like I am alone and weird and broken, when evidently there are lot of others who must be feeling the same way. People that could probably help me. And people maybe I could help.

So yes, I am infertile. And if you ask, I'm going to tell. When you get a real answer you didn't want to hear, maybe you can be the one who feels awkward or embarrassed.  Because I am moving on.

* * *

I wrote this post months ago after obviously a time of frustration. I wasn't ready to share at the time but it was therapeutic for me to get my feelings out. While this isn't necessarily how I am feeling now and it is pretty raw and personal  (I'm not sure I planned to ever post this), today seemed like the right time to set it free. Maybe someone dealing with this issue can find some benefit and those who can't relate can be a little more aware...

Sunday, August 3, 2014

Japan Day 6: A Tokyo Must Do

I'm getting a little behind on my travelogue of Japan! My main purpose, besides amazing and entertaining you with every last detail of our trip, is to remember the details myself. Things are getting a little more foggy so I better continue. After all, we are so close to the end.

Day 6 in Japan started very early! We had been told by almost all of our contacts with Tokyo experience to go to the Tsukiji Fish Market, the largest fish market in the world. This is the same market featured on the documentary on Netflix, Sushi: The Global Catch. In doing some research we learned that many of these fish sell for tens of thousands and sometimes hundreds of thousands of dollars.

Probably the best time to see the market is when you first arrive in Japan, while fighting jet lag. We waited until day 6, when we were already tired from our almost week of travels. If it hadn't been for the many recommendations, it would have been easy to skip. Instead, we dragged ourselves out of bed, found a taxi (as most of the public transportation is down at this time of day -- we learned this the hard way later in the trip), and headed to the market.

We were pretty pleased with ourselves for getting there so early without a long line, until we got inside the waiting (felt more like "holding") area. Our arrival at 3:40 am put us at the end of the second group of tourists. If we had been much later, we would have had a 4 am round trip taxi ride to enjoy one of the busiest cities on earth in the middle of the night in the rain. I'm glad we made it in the nick of time.

A decent picture for 4 am!

Waiting...thank you Kindle! 
We were given fluorescent pinnies (like the ones you wore in scrimmages in sports growing up) and told to wait. We were the second group of 40 tourists who would be allowed to watch the fish auction that morning. Evidently, before this restriction was placed, the area would be overrun with tourists and this would disturb the many fishermen and workers who obviously are trying to work. The time went surprisingly fast, killing time reading and speaking with some Spanish tourists and sharing tourist tips and tricks. They were the first to tell us about Maid Cafes (some foreshadowing).

At 5:30am the group ahead was finally whisked away to fish market auction bliss, and finally our group at 6:00am. We were rushed through the market, busy with trucks and carts and men in boots and coveralls. We were brought to a warehouse full of rows of large frozen tuna. The buyers were inspecting the fish and deciding which to bid on.

Waiting to start...

The fish are marked with info like where they were caught. 
The buyers inspect the fish, often by jabbing their hook into the meat at the cut end of the tuna.

Suddenly the auction began. The auctioneer closest to us stood on a crate and started ringing a bell and speaking in Japanese very quickly in a sing-song way.

This is a video posted by a man in our group on YouTube so is exactly what we saw!

As the fish were purchased they were loaded onto carts and taken away.

It seemed like minutes later it was all over and we were rushed away back outside.

The security people were pretty firm in not allowing lingering for a second. It was their responsibility to keep us safe, but I think mostly out of the way with all of the traffic of such a busy market.

The next step was to get some fresh sushi for breakfast. We walked around for quite awhile, clueless where to choose. The other tourists seemed to gravitate to one really long line. We (evidently along with a lot of other tourists) felt a lot of angst over choosing a restaurant and wanted to go to the "right one." We finally decided we didn't feel much like waiting (we had done our fair share already that day, and it wasn't even dawn yet). We figured as we were in Japan, at the biggest fish market in the world, we were probably about to eat some the freshest sushi in the world -- regardless of which shop we chose, it would probably be far superior to anything we could get back home. Come on, we live in Iowa!

We ate for under $20 each. 
 We found a little shop with a small counter and ordered some sushi for breakfast. I have never been so excited to eat raw (or any) fish at 6:30 am (maybe it was like lunch to us after being awake for so long). We both ordered the tuna in a rice bowl with a side of soup. Yum!

Abe got the less expensive option, which seemed more like the left over pieces of the fish. 

Mine was prettier but I think his tasted better!

When we left we saw a line that wrapped around the block. We asked an American tourist what everyone was waiting for and he told us it was a famous sushi restaurant with a four hour wait. Even at 7 am. I am sure it would be something to experience but our tired little bodies were happy to be full of sushi and on our way. We had no regrets.

Exploring the market, a shop worker preparing the tuna

Abe loves this egg dish, tamagoyaki, they often serve with sushi

We spent some more time walking around the market and bought a few souvenirs (I love Japanese dishware). On our way out we noted there were many fancier sushi restaurants further away from the docks that would have probably been just as great an experience. So much for the angst! 

And then we headed on the train back to our apartment for a little nap!