It was pretty risky for me to attempt to put our « journey » (ick) in a three part series using nerdy trilogy movie and novel titles. Tricky in many ways: 1- I would have to continue the theme (which I haven’t) and 2- I’m not sure three blog posts are enough! So I’m breaking ALL the rules and adding a mini part 2 & 1/2. This part of our story however is less about us and more about how our health system has let me and thousands of others down and continues to do so.
As you may- or may not- know every province has autonomy over their health care systems which means care for infertility patients looks very different depending in which province you find yourself in. Much to my chagrin (but SO good for others) my home province of Ontario that I left only 8 years ago, has IVF coverage. This means that if your doctor determines that you fit the right criteria for IVF, you are put on a waiting list. Once it’s your “turn”, you have coverage for 1 retrieval plus (here is the really awesome part in my opinion), every embryo transfer done with the embryos collected from that initial retrieval is also covered! Seriously amazing. It still has its limitations and is not perfect by any means, but this is a step towards equitable care. Here in Alberta is a much easier story to tell: NOTHING IS COVERED. Sorry, was I yelling?That free IVF cycle in Ontario that I described? That cost us approximately 18,000$. Not only that but there are only 2 clinics (once was three but I’ll get to that...) for the entire province. “But Sara, surely you have good medical insurance that at least covered meds”. Hahahhahahahaha On one of the best medical insurance plans, I get 800$ a year for infertility medications. Because my husband and I work for the same school board I get an additional 800$ for a total of 1600$ per calendar year. I blew through that in two months for only two IUIs. For my IVF cycle I calculated that each injection I took cost me 100$ based on my dosage. When I contacted my insurance provider to see if they were willing to revisit their plans to include more for infertility here is the response: “Hello Sara, from what I can see because you and your husband both have coverage you will have 1600 per year! That will be more than enough to cover your costs! Thank you for your questions!” Door slammed. I would soon realize that more doors would be slammed on us in such an unexpected way. Going into our last IUI, we knew if it failed our next step was IVF. However, before getting yet another negative pregnancy test, I would see a news story online that really put in jeopardy our future. “ Royal Alex Hospital is closing it’s Fertility Clinic” A simple headline I see while scrolling Facebook. That’s my clinic. I remember going numb, trying to read the article for more information. There really wasn’t more. The government of Alberta decided that a non covered service (infertility treatment) had no place in a building that was run by tax payers dollars effective in a few months. Even though all 4000 patients of this clinic paid for services out of pocket, even though it had been open for years, even though much of the care provided does fall under the Alberta Health Care System (consultations, routine medical tests, bloodwork, management care etc). I was angry. I felt so incredibly let down by a system and government that should be making my life better not worse. For me and for thousands of others the closure of this clinic is by no means a small deal. For us, that meant waiting months for another referral to another clinic, it meant re-doing many of the tests, it meant paying more at a private clinic that runs like a business. It meant that the only other clinic in Edmonton would suffer because it would grow by close to three thousand patients in a few short months. For others it meant that they no longer can afford treatment, or that the future of their frozen embryos was unknown. Most of all, for me it signalled that this place and medical team I had grown to know, who took care of me, who I trusted would be forcibly taken from me. The next few days I spend on hold with the clinic, with Alberta Health, with my MLA, with the minister of Health, with anyone who would answer my questions and tell my why infertility is a medical diagnosis that could be ignored and it’s sufferers casted away. I know thousands of others were doing the same. There are some amazing women who put countless hours into lobbying, petitioning, marching, having meetings with various ministers, to get this message across. Still suffering in silence, I did something unusually brave. I wrote to CBC Edmonton to tell them of my story and how the closure of the Lois Hole Clinic at the Royal Alex is and will affect me, wanting them to continue to cover the story and for them to keep digging to apply extra pressure on the government. What they wanted was an interview. So at 530pm I did a live over the phone interview with Portia Clark on Radio Active about my story. It is still unbelievable to me that the first time I tell someone of our story and how this effects my life, I do over the radio. I was that angry. I was not going to make this easy for them. I was already fighting every day, what’s a few extra punches? Yet, no matter the letters I wrote, the petitions I signed, the conversations had with government, the clinic closed and all the issues we worried about, all the logistics we were warning then of, happened. I saw my doctor hang his head in sadness, tears in his eyes because not only was his job in jeopardy but everything he cared about was being taken away. Almost a year later, the anger has gone but not the hurt nor the hopelessness that comes with being an infertility patient. I was happy at my new clinic, and received the care I needed but what brought me there will always be a stain in my memory. The transition to the other, for profit, clinic was relatively smooth for us, but that is not the story for other patients. Lost frozen embryos, and new rules at this clinic that would cause them to be denied treatment. Although we have received the care we need, although at greater cost, there is still such an injustice around what brought us there. Infertility treatment = nothing is fair but you have no choice but to deal with it. In the end it’s a medical condition that is still being treated by society and governments as though it is something we have chosen therefore not deserving of adequate and equatable care. There are thousands of Albertans and Canadians, who are denied a family simply because they can afford it. We have already sacrificed so much for where we are now. We would do whatever it takes, however it still doesn't strip the bitterness and injustice that comes with making these sacrificial financial decisions that others don't have to make.
0 Comments
(LOTR fans, please tell me you get this). Here is part II of our 3 part trilogy. If you havent read part one read it here: Infertility Wars This part begins possibility the darkest and most difficult part of my journey. Although, remember, as I write this my journey is not yet done. Perhaps the Gods are looking down laughing and shaking their heads, knowing what is to come. I will continue in my blissful innocence and look back at this time with reflection and appreciation for the difficult times this period brought to my life. It isn't that things are not not difficult right now, actually, treatments have become more of everything (more money, time, pain), but this time period was difficult emotionally. I look back and feel thankful for the the work I have put into my mental health and thankful to the various resources, and online communities that helped me get through.
This moment ended only 8 months ago, yet it feels like centuries ago. Writing this, it is as though I am writing not about me, about my experiences, but of a fictional character from one of my writings. That is a testament to just how altering these experiences can be, infertility will twist you until you are unrecognizable to yourself. Surprisingly, often the growth I have experiences through this has been positive, if we are looking for silver linings. However, the moment in time of which I am writing is one where I never thought of the word "good", "positive" or "silver linings", things were dark, and I was really in a bad place. In Part 1 we left off with my first appointment with my Reproductive Endocrinologist at my fertility clinic. The visit was calm and his personality fit with ours, as we sat there going over various test results, our medical histories I thought : "This man is going to get us pregnant" (SPOILER HE DOESNT). Then very quickly a wrench is thrown- "Let's look at this biopsy you had with Dr.Gyno...humm...did he go over these with you?" "Uh, no..." I answer actually forgetting completely that I had a quick biopsy of my uterus. "Well... are you sure he didn't go over any results with you? You didn't get a call from their office or anything?" "No..." I look over at my husband worried. "Ok. Well, results have come back and it's something I am not quite sure about." WHAT. "So... I'm just going to look on my computer here...I've got this google for doctors thing and then I can tell you more. But in the 30 years I have been doing this, this is the first time I see this!" Of course - of course there is something else. Something weird, like an episode of House. There are actually no thoughts running through my mind, I am stunned but also I still have no idea what this could be. After a few minutes of reading various sources of information, my RE still does not seem sure of what he is reading in my file. "So...from what I am reading here, it is a very rare abnormality in the cells...but it doesn't seem like you have any of the other factors that would indicate you have this condition, expect for this biopsy. So it could be cancer or it could be nothing. It's probably nothing, but let's take a biopsy right now to make sure." Not something anyone wants to hear during their first visit at a fertility clinic, or ever. It took almost two months before I heard back from them with the results of that second biopsy. TWO MONTHS where I walked around with what I felt was a ticking time bomb in my uterus. Never mind any thoughts or hopes about trying to create life, was I going to have to save my own? Of course I thought the worst. Of course this added to all the anxiety and stress we were already feeling. This is something I have shared with no one, and I am happy I chose to keep it to myself. The biopsy did come back normal, and I opted for a third one just to be sure, and it was also 100% normal. Finally, we were able to get to the reason we were at the clinic in the first place. The frustrating part is jumping through all the hoops, some that were already jumped through. Tests, bloodwork, samples, routine meds just to double check. Again, we did a few cycles of letrozole only to no success- it should be helping my body ovulate but, it wasn't. The next step in treatments is the Intrauterine Insemination or IUIs. For me this relatively "easy" procedure was coupled with Gonal-F that injected once a day for almost two weeks, and a "Trigger" shot (ovidrel) to bring on ovulation. The IUI itself is no more than a regular pap test where they inject the sperm, however my experience through these three unsuccessful IUI were very difficult. I did three back to back cycles, in the winter months of northern Alberta. Everything was piling on and I was really struggling every day during these months with depression, hopelessness and exhaustion. The medications I was on helped to make my depression worse, coupled with the fact that we were shouldering the burden on our own. I felt like it was a secret I had to keep, one I didn't want anyone to know. I was still learning about infertility, about pcos about this entire world that has existed parallel to mine all along. However what really brought things over the edge was the extra burden of distance from our clinic. The 3 hours to the clinic and 3 hours back was done approximately 5-7 times in the 3 weeks around the treatment and monitoring for each IUI cycle. Every other day, or every two days while taking Gonal-F, I would wake up at 4am, leave my house by 430-5am and drive to my clinic for a 5 minute ultrasound to check the progress and growth of my follicles. I would get bloodwork and by noon or later I would make the trip back home. Repeat. Repeat. Repeat. One morning I woke up to a really bad snow storm. I had to go in or risk the cancelation of this cycle that I have already put so much time, and money in! Taking the back roads that were not yet plowed, the snow on the road was so deep that it was almost impossible to drive through. On I went. I stopped at one point, in the middle of nowhere, no house, or car in sight for hours, in waist deep snow, crying in my car. Was this worth it? How much longer could I do this? (turns out another year at least...). How much money were we throwing away to a treatment that has such a low success rate (every IUI costs 300$, plus gas, plus parking, plus the meds that were no longer covered because I maxed out my insurance coverage with one single week's worth of meds...). Somehow I made it on time and drove back after the appointment on freshly plowed streets. Looking back now, I should have taken a break between each cycle. I should have taken a medical leave so that my students didn't suffer and so I didn't have to risk my life in snow storms every other day. But infertility is a race against the clock. One month off is one less chance. One month off is means I am one month older and further from where I want my life to be. This period of time was dark in all senses of the word. None of those IUIs were unsuccessful (I didn't even ovulate for at least one of them). Every unsuccessful cycle brought a mourning period and instead of allowing myself to heal, I jumped into another treatment, in the dark snowy months. Eventually I decided to seek help not only from my therapist (who has been so wonderful, and understanding as she herself has dealt with infertility and now leads a childless life) but it is also when I started to connect with other women through a podcast : Matt & Doree's Eggcellent Adventure and also the amazing community on instagram. Those four things are key to where I am today mentally and emotionally. Heads-up, I will be attacking the favourite Facebook comment of every aunt, friend and your mother’s co-worker’s daughter’s cousin. I am doing it. I’m talking about the go-to comment on someone’s picture : “What a beautiful family!”. Easy, kind, and complementary. I freeken HATE it. I cringe and think about deleting my account every time I see it.
If you want to use it or have used it in the past, stop your panic, and think about why you used it. What did you mean by that comment? Was it just that: “You guys are good looking. All of you.” If the answer is yes, then ok, you are almost cleared. The next step would be to ask yourself if you have used this comment to all different TYPES of families? Have you said to your brother and his girlfriend: “Beautiful family”? Have you commented on a picture of a friend and her four cats? How about a couple and their dog? What about a picture of a couple, alone, just them. More difficult to answer I assume? My family is my husband and I, my dog and cats. Then I have my extended family of my brother and parents, then grandparents, aunts, cousins.... Can only some of these types of families be beautiful? As a quick experiment, I decided to search the words : ‘beautiful family’ in my Facebook search bar. After you scroll down past the different groups, random public posts you get to the posts made by my Facebook friends. These are not comments that are put on posts, but just the posts themselves. Out of the 100-200 posts I eliminated those that simply had the words ‘beautiful’ and ‘family’ in the post, but not together. This bring it down to about 50-60 posts in the last year. EVERY SINGLE ONE OF THESE POSTS WERE ABOUT FAMILIES WITH CHILDREN. Here we get to the heart of why this is my most hated comment, and why I am taking the time to write a post about it. What do people really mean when they say : “What a beautiful family!” or “My beautiful family!” etc? I am going to go on the basis of my very unscientific research : this is a comment only directed to families that have children. Whether it’s coming from your great aunt, or it is a comment about to their own family, it is use only when the picture includes children. I have gone through my own pictures of my family on Facebook and Instagram to look at the comments and evaluate them with a different angle. Engagement pictures, wedding photos, pictures of my husband and I, even ones with us and our dog...NONE of these pictures have any mention of the words “family”. Are they kind and loving comments? Yes. Have people called me or my dog beautiful? Yes. The closest comment to “beautiful family” we have received is: “Looking good!” or “great couple!”. By using a reading strategy I painfully teach my middle school kids every year - inferencing- I can’t deduce that society thinks that families without children are NOT beautiful. They are not the ideal, the norm, the wanted, they are not a family. They are incomplete. Family = children. This is the heart of the issue for me. I am sure that every childless couple, whether they are suffering from infertility, child loss or they are child free by choice, knows and believes that what they have is a real family. They feel it, they know it, yet society does not accept it. It is as though everyone is waiting for a child to be born for them to become a family. In our case, as a couple dealing with infertility, it already does feel like our lives are on pause waiting for a child. I know that the last three years, I have not lived as fully as I could have been. Every decision is made through the lens of : "but what if I get pregnant" or "but what if we have a kid by then" or now "but what if we need to do another round of treatment?". Reno the deck? No, we might need that money for IVF. Take a trip? No, we might need that money for treatment. Go on on an out of province conference? No, what if that interferes with treatments? Things have been on hold and it sucks. It's frustrating and I want to take my life back as much as I can. This is a simple way to do that. I don't need society to tell me that my life is not complete, that what I have is not beautiful. I am not here to be a word police or a Facebook comment Debbie Downer. Go ahead and keep saying it. PS. please don't go crazy and comment "beautiful family" on all my pictures now, I don't need it. Just keep it in mind when seeing pictures of all types of families. Yes, there are lots of beautiful families of all types out there! I just want you to remember that mine is too. Me, my husband, my Great Dane and two cats. We are a beautiful family, just as we are. Maybe one day this family will include a child, maybe not. No matter what it looks like, we are a family and damn we are beautiful. Although I have been loving sharing more emotional writing and demonstrating the everyday live of a couple dealing with infertility, I have yet to share our actual story. Here is the first part in a 3 part trilogy. If you were curious about the hard facts and details of our «journey» (gross word I know...) then here it is! I had always assumed that I would have «problems» conceiving, although my idea of problems were nothing compared to what I am experiencing. Always having an irregular cycle, there was no way this would be a walk in the park. I didn't know that I had PCOS, but imagine how much less painful this process would be if I did know! Alas, we can't turn back time, but please talk about your periods with EVERYONE. Okay, maybe not, but talking about them will hopefully bring awareness to PCOS and might help get girls and women diagnosed before they start trying to conceive. Blah, blah, blah, after over 6 months of trying, I fast tracked my way to an appointment with a gyno in the city. Fast tracked = I lied to my family Dr. I know... how dare I! To be honest, my experience with older male family physicians (I am sorry if you are offended but this is my actual experience...) is that when it comes to female reproductive issues : one, they don't want to deal with it so they refer you else where, or two, they minimize your issues and tell you something like: «this happens to some women» but don't do anything to help. I have experienced the later so many times that I really wanted just to be referred. So, as expected, my family physician, gave me the following advice even KNOWING my symptoms of what is now diagnosed as PCOS: 1- relax 2- take a trip However, I am happy that he did do two important and helpful things: 1- Prescribe me Clomid (a medication that helps regulate ovulation) 2- Order a series of «basic» tests such as: day 3 bloodwork, day 5 bloodwork, semen analysis tests, ultrasound of uterus and ovaries, male reproductive system ultrasounds. 3- told me to come back The lie lays in the timeline, for someone my age, they usually want couples to «try» for a full year before going any further with investigation or treatment. Although I usually am a rule follower, I KNEW that this was a rule I needed to break. Almost three years after this moment, I am happy I did and I am happy I followed my gut. I cut myself some slack on this one because after being off of birth control for 7 years, and never once getting pregnant...something had to be wrong. I was then referred to a gynaecologist in Edmonton. He ordered some of the same tests, but also added in others. The amazing HSG test. The test that feels like they are injecting liquid fire into your uterus. For this test, I went to the hospital in the radiology department. They inject a liquid while under an xray so they can see and track the liquid going into my uterus and fallopian tubes (btw I have never been a winner at biology so please excuse the crude non scientific details). Their main goal is to rule out any blockages. For some women this test is not any more uncomfortable than a regular pap, but some others, like me, it really is the most painful experience. I drove myself in at an early hour, then there I was laying on the cold slab of a metal table for an hour while I teetered on the edge of loosing consciousness.... and because I am so lucky, I got to do it twice! During the first test, they were unable to determine if my right tube was open so we scheduled another one 6 months later to double check. Again, fire water, then I had to drive myself home as though nothing happened. I remember crying most of my 2 and a half hour drive home. The mixture of pain, the exhaustion and the fact that this was my new reality really hit home. One of the last of the important tests was the uterine biopsy to cross of the chances of various cancers that would effect fertility. I will circle back on this test during the second part of my trilogy. Everything being clear, there was nothing that my gyno seemed to think was at the root of my infertility (again, no mention of PCOS). Instead of Clomid, which was not helping ovulation, I was prescribed Letrozole a drug usually given to cancer patients. Because I was not a cancer patient, insurance companies does not cover the medication, so the cost is on me (this will be a theme in this story...). Then, more trying, more waiting....more nothing. After six months, an unexplained infertility diagnosis, and I was referred to a fertility clinic in Edmonton, at the Royal Alexandra Hospital. In my last follow up with my gyno, the fact that conceiving was going to be more than just a challenge, that my life will CHANGE and is changing because real, and hearing someone say that was difficult. "Is this something you want? Because, you will have to make the decision to seek treatment at a fertility clinic. If you are ready for that, then I will refer you, but this wont be easy." I was hit with mixed feelings: sadness mainly, but also the positive feeling of moving to a step that could actually DO something. The inaction, the inability to control what was happening to us was wearing me down. Knowing there was something else that could be done, although I wish I didn't have to do it, was calming. "There are people who can help. There is a way." These thoughts prevailed as I assented to my gyno, through teary eyes, to refer me to the fertility clinic. These pictures are so important to me. Look at them, please, and join me in appreciating the mothers that surround me in my life. My friends, my family are, or will be, such amazing mothers, in all senses of the word. For me, that means providing a safe and caring home, fostering creativity, encouraging courageousness and self actualization, love and kindness. Mothers who have or will help their children learn, fail and keep trying. Mother's Day recognizes these giant every day successes they make that otherwise go unnoticed. It IS important to have this day and recognize all types of mothers that exist. Also to recognize the various types of pain associated to this day. Amongst the women you see, there are mothers who have lost mothers, mothers who have suffered miscarriages, mothers who have lost children- this day is difficult for many people. It is also why I chose to only post this at the end of M Day; I do not want to take away from other's joy and other's pain, they are valid. I want to love and celebrate the women you see above. Here lies the double edged sword I feel at my throat: Mother's Day is one of my worst days of the year. I hate it. I want nothing to do with it. So there. Mother's Day and infertility is like showing up at a costume party with no costume on. You open the door, and like in a movie, the music stops, people stare. "Hey, where's your costume?" The same question over, and over and over...Only, the question is, "Do you have kids?" or "When are you going to have kids?". This is the song that never ends, and it will go on and on my friends... I sing this to my self after many such interactions because it really is never ending. Oh, and annoying. Loving posts showing smiling children hugging their mothers with handmade cards, flowers from husbands, brunches with grandparents. All of it special, and important, yes. To me, they are flashes of what my life should be, but isn't. Every single mention of the world Mother's Day on t.v, radio, in ads, billboards, signs, cards (I could go on), is a jab in the heart. I am in a constant tug of war with my emotions because while I appreciate the mother's in my life, while I want to shower them with love, I really just want to disconnect from the world and pretend as though it doesn't exsist. For me this is a day of grieving, a day that reminds me what I have lost and what I do not have. Many studies show that women and men who are going through infertility suffer the same effects of grief as someone who has lost a loved one, even without having experienced a miscarriage. From experience and from what others in have said, this grief often comes in short cycles, every month or few months and every time we see yet another negative pregnancy test. Every month for the last 2 1/2 years, I have felt loss of all kinds. Loss of a potential child, loss of control, loss of motherhood, loss of the body I used to have, loss of experiences, loss of what I thought my life would be. M Day, is a moment that brings all of these feelings crashing together. I wrote a short story, that I have debated posting on my blog, over a year ago. In that story I liken infertility to drowning while everyone is watching, smiling. Intense metaphor, yes....but truthful. What is the most difficult for me is often the messages society continues to attach to M Day. While I understand the sentiment, I believe that these messages are not positive for anyone, infertile or not. I've collected these problematic messages for you: - "Only a mother knows a mother's fondness" -"The only love I believe in is a mother's love" -"No one loves like a mother" -"You have no purpose until you have become a mother" -"Life does not begin until you are a mother" - "Becoming a mother is the greatest thing I will ever do" and so on... While I completely understand the spirit of these quotes, they really do nothing to help mothers or anyone else who may not be a mother. Like mother's really needs to hear, again, how their entire identity is wrapped up in their children and are serving no other purpose. Like those who have chosen not to have children need to hear, again, how they have chosen not love and not to have a "complete life". Like those of us with infertility need to hear, again, how we are failing and that our "life will not begin" or might never "begin" because we can't be mothers no matter how hard we try. Did you know that most women dealing with infertility avoid going out in public on this day? I did. Except that I had to run to the store because, as usual, I forgot something on my list. I walked through the isles hurriedly, not making eye contact. Even with this technique, I was wished "Happy Mother's Day!" three times. Every single time, was painful and awkward. I should say: I suffer from infertility, I don't have any children...but I couldn't. I smiled (I think) and said "Thanks!". It does help me to think of the important mothers in my life, it gives me joy to know that they feel appreciated and loved. However, please be kind to yourself my fellow infertility sisters, remember that YOU ARE ENOUGH. You love as deeply as anyone else, and you are worth just as much. Hug those animals in your life because, as much as people like to joke, they are our babies and without them I am not sure how I could get through this without their love. To those with friends or family dealing with infertility, we do not ask you to stop posting those cute pictures, we do not ask you stop gushing about your children. Perhaps what I am asking is think about the way you are framing your statements: is it doing justice to yourself as an individual, others who have a different situation than yours? More importantly however, have in your thoughts those people who are not as lucky as you are, truly appreciate what you have. Maybe send them a message or just give them a hug. As always, love is always the answer, and making sure they know it is even more important on these types of days. Articles: Grieving and Growing by Beth Jaeger-Skigen (RESOLVE) - https://goo.gl/FA9EsG Infertility and Mother's Day Coping Strategies by Fertility Authority- https://goo.gl/MR9b8D For some of you, my «coming out» post may have been a surprise you weren't expecting. Or, maybe, you had your suspicions and it just confirmed them. Maybe, it may not have been fun or pleasant to hear my news. I am not here to apologize for it, but to tell you that I understand your various reactions, and perhaps to offer some clarity.
I know how it feels to hear the pain and the struggle a friend goes through, months or years later. Or finding out really good news second hand from someone you know your bestie is not close with. It feels like a betrayal, like you are not good enough to to be given this important information. I also know, that there are reasons why people don’t speak of such important things. The reasons why are not always good, nor are they always bad, but there are reasons. Sometimes you don’t want to hurt someone so you think that keeping this information to yourself would be better. Other times, you are too embarrassed to talk about it; you wish it had never happened so you don’t plan on keeping it’s memory alive by speaking it into the universe. Sometimes it is because you are afraid of what others will think or how others will judge you. Maybe, even, it is just too painful to talk about. It is easier to keep it a secret, because they can not find the words to explain even if they wanted to. People are complicated and secrets even more so. I have kept my secret for all the reasons above. I didn’t want to burden others with my problems, especially while others have their own struggles. I am embarrassed by my body and it’s lack of functionality. The inability to do what I am biologically made to do, is embarrassing. Now, I know logically, that this makes no sense. Why be embarrassed by a medical issue? First, society has still chosen to keep the female reproductive system as something to giggle about, something that somehow is still considered a mystery. Secondly, society can not disassociate women from their maternal roles. Women = mothers. Women = wombs. This in it's self is a huge field of research in Sociology, History, Law, Psychology and Women's Studies just to name a few. The conversation around the questions "what is a woman" or "what is a mother" are still very necessary. Even for mothers not dealing with infertility, this is a huge hurdle when trying to construct their identity while fulfilling their parental role. Imagine trying to construct an identity that is just not accepted. Once, when I answered (for the one millionth time...) that no, I don't have any children, the person responded: "But you're a teacher! You have to have kids!". My identity is doubly labeled: I am a woman so I must want/need/have children, and I am a teacher so my skills and ability are linked to my motherhood. In my case, I fit none of these formulas and society just cant compute. Those with infertility, are often pushed to the outside of society. Life in North America at least, is built around the family unit that is : parents + children. If you don't fit that mould (yes there are many other examples of people who don't fit that mould but here I am addressing my experiences), there is a sense of embarrassment that follows. I am afraid that people will treat me differently, whisper behind my back “oh.. yea... she can’t have kids, did you know that? yea, so sad.” I don’t want them to think that I am broken, no good and defective. Because, guess what...people do. Lastly, the main reason, is the pain. I have never been good at expressing myself with the spoken word, I clam up, I shut down. People will try to pry it out, but when I struggle, I struggle in the dark. Why would this be any different? A subject that society wont even touch? Yea, I’m keeping those cards right close to my chest. While in the thick of treatments, I was unable to make it through a day without breaking down. I had a hard time putting regular, day to day thoughts together, or having the energy to make it to the grocery store. Here it is. Finally, the truth. Every dark, mean, painful, funny moment of it. “Isn’t this going to be worse, writing a blog for everyone to read?” Oh, yea, it might be worse, but the difference is that I am now ready. I have been on a break between treatments and it has given me the time to repair. Finally, I am able to mentally and emotionally, to talk. I have been constantly working on myself and this moment felt like the right moment. I have been covering the windows and tying down furniture for a storm. To be honest, so far, that storm hasn't hit. It gives me the hope that people are at their core understanding and loving. If you were one of those still trying to navigate through your confusing emotions regarding my secrets and their revelation, I understand. Know that my secrets were about me, not you. Thank you all for showing me that sometimes the storm is in my head and for proving that speaking about things that make us uncomfortable are sometimes the most important conversations to have. Band-aid off. “When we protect ourselves so we won't feel pain, that protection becomes like armor, like armor that imprisons the softness of of the heart.” ― Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times If I am being truthful, which it looks like I am, I had known that something was wrong with me, with my body. Although young girls my age were taught no two female bodies are the same, I realize now that there is a limit to the differences. There comes a point that differences turn into medical issues. “ Sorry to break it to you that you are SO different, so special, that your genetics have decided to give you a syndrome that effects just about everything!” YAY ME. There were many possibilities, there are many things that could plague a woman’s body, but I was never given reasons for my differences. No two periods are the same, blah blah. Starting the “we are trying” process was really the first time that I had considered that my lack of normalcy was due to a graver issue than just having a body that acts differently.
Almost two years into “trying” (my RE told me that this word was a purely female word, men are always trying), three different doctors and an endless stream of tests that poked, that took and that hurt; the answer was there. Yes, there is a reason. Part of me was relieved, because finally all those people who liked to tell me their opinions as to why I couldn’t get pregnant, can finally...(you know). “Well, sometimes you just have to be patient, relax and try not to be so stressed. You know, when it is meant to be, it is meant to be!” “No, mam. You are wrong. You have no idea how to appropriately deal with this type of social situation. I have a medical condition called PCOS (jury is still out if I have the ‘s’ or not) that causes cysts to form on my ovaries, causing me to not ovulate. So you think that it is meant to be that I have cysts on my ovaries like little blood suckers latching onto my hopes and dreams, sucking them away?” A blank look, a gapping mouth, like a fish trying to suck in the air that cannot give it life. “Meant to be that for some reason, my body produces these little pockets of disgusting death, that can burst at any time causing a pain that shoots up your spine and into your organs as though they are all being stabbed at once?” Sucks to your ass-mar. They never have an answer and they always walk away thinking to themselves just how much of a rude person I am. They would whisper under their breath as they tried to catch it. Yea, yea, lay it on me. The truth is always hard to take, it is too real. What would have been an appropriate response? I didn’t give her one. In reality, I didn’t have the voice to speak up and offer even the most kind of answers. How this conversation usually goes, if I am being honest (duh, I am) is the employment of the following launch sequence: 1- gaping mouth, like when I try to unblock my ears in a plane 2-eyes to the ground 3- a bobbing of the head side to side as though I am doing the littlest of dances from the shoulder up 4- fake smile behind the tears 5- “ahh, I’m too young for kids!” or “Ahh, one day!”. In both scenarios, real or wished, I am left with the same thought: Maybe that wasn’t fair. Guilt is one of the main emotions we infertiles (as I have often heard other women refer to themselves as) deal with. Again, I feel guilty for my rudeness, yes, but also for her ignorance. For society’s ignorance over this issue. It is my fault, I shouldn’t be speaking in truths. Shouldn’t I keep it to myself, just deal with it...just smile and chuckle when they say things like that? Guilty for, just feeling damn guilty. That has become exhausting. Maybe that first scenario wasn’t fair, but life is not fair. Believe me I know, me and Life, we have beef. Hopefully, next time someone is about to give their words of insensitive wisdom to someone who may or may not be going through what I am, they think about it and choose something else. Platitudes don’t help, these words of consolation that only point to the obvious problem and show it off. “Hey, I see you have a broken leg... ouch... Have you tried walking on it?” says a non medically trained person who once stubbed their toe. “Oh, you know what, no! I’ll try that!” No, time will not fix this. Infertility is a medical condition. Medicine, not your old wives tales, can help. Medicine can give us a chance, not holding my legs up. In case you have caught your self and, perhaps, self identify as a fellow Woman/Man of Wispy Words, I have conveniently provided you with a list of things you can say to a woman or to a couple struggling with infertility: 1. I am sorry this is happening. 2. Do you want to talk about it? (If they say no follow with #3) 3. When you want to talk about, let me know. I can listen. 4. What do you need? 5. I love you. 6. I am here for you. 7. What can I do to help with your pain? 8. Help me understand what you are going through. 9. You are not less of a woman. You are strong, you have worth. 10. YOU ARE ENOUGH 11. That’s not fair. 12. When you feel up to do, can you explain *insert procedure, acronym, test, appointment, injection, medication, HERE 13. I love you. 14. I will accept you and love you no matter what life brings. It hurts to think that these words are not on the tip of everyone’s tongue. Shouldn’t this be said to all, shouldn’t friends, coworkers, heck, strangers believe this and say this no matter what? Perhaps I need my own list of key phrases to understand the thoughts of those fertile goddesses with wombs that pulse with life. “Wait. This is not fair”, I hear a voice cry out. This could be the voice of many, maybe that is your voice? “I had no idea that you were suffering from this! How was I supposed to know! You can’t be like this!” the chorus cries. Right now, I can actually be like this. This is what I need. This is what 1 out of 6 Canadians need. Empathy and the move towards understanding. We don’t expect you to understand, that is not possible. You can not understand, truly, unless you have suffered from infertility your self. * DISCLAIMER: (and possible side rant) - you can only say that you have infertility IF YOU HAVE BEEN DIAGNOSED BY A DOCTOR (and fyi unexplained infertility is a diagnosis). “I tried for two months before I got pregnant, I know how it feels.” You were worried, yes. You were anxious, yes. You wanted something really bad that did not happen right away, yes. You had a challenging time conceiving, sure. You had infertility? HELL TO THE NO. Yes, answers are helpful. I know why I can't conceive, I know what to do, I know what I should type into my browser so that I can spend endless hours online reading all the worst cases of this and assume that I will die. We don’t have a Golden Ticket, and sometimes answers make the situation seem more simple than it truly is. In the world of infertility the goal posts are constantly being moved. We know that answers are a mirage we can't trust. In reality, I know that when people offer tips and tricks that have been circling for centuries regarding conception, I know they are full heartily trying to help. I think that perhaps infertility has been taboo (don't even get me started in this...) for far too long, and society still doesn't really know what happens when the one thing evolution has built women to do, is broken. Hopefully, if more people speak about it, like anything else, the stigma will slowly dissipate. Until then, know that my bluntness is not meant to insult, but to simply be real. I will not sugar coat, I will not hide my pain any longer just to make others more comfortable. There will be no sugar tonight, my friends. I have already gone through 3 different drafts of this 1st blog post. I have already spent way too many nights tossing and turning going over the words I want to express, but yet still unable to express them. If there is one thing this journey has taught me, there is not thing that can truly, fully explain this journey.
I don't like the word journey, but I use it. Journey for me seems positive and exciting. This is not that type of journey. In case you were expecting that, I want to warn you, this is not the spot for your daily dose of inspiration or joy. (I have the Lemony Snicket's theme song in my head right now... look away, look away....). I should warn you that you may not agree with me and you may also be challenged by what I have to say. I tell my students that in order to grow, you must be challenged and I will say the same to you. If you are new to infertility, then you may find a blog post too bitter, or sorrowful. You may be insulted when I point out some things people do every day that is actually quite hurtful for those struggling with infertility. Do know that this is for me, and for the 1 in 6 canadians that struggle with the many forms of infertility. This blog is for all of those who can't find a voice for their struggles, because I know that feeling too well, and it is stifling and suffocating. In fact, that was me a mere week ago! The week of April 23rd-29th is the Canadian Infertility Awareness Week. In the States, this is also the National Infertility Awareness Week. This is the catalyst for this «coming out» blog post. You may not be aware of the huge and life changing community I have been a part of for the last two years or so. This infertility community is for most of us, found in secret facebook groups, locked instagram accounts, or conversations in facebook messenger. This community is amazing. I have women who I consider friends, who I have never met, but speak to almost every day. I see their ups, their downs and they see mine. Most of all, they understand. Their understanding has changed my life, and changed me. Just look, I am writing a BLOG POST ABOUT INFERTILITY!? If you spoke to my therapist a month ago, she wouldn't believe you. (oh by the way...therapy has also changed my life. You should see someone. Seriously.) CIAW and NIAW has lead to thousands of women and men sharing their stories, and I was inspired. My community has also supported me while I flipped flopped about sharing; they reached out and encouraged me to share. They are here now, reading this post. I hope you don't actually look away, because your infertile friends, your LGBTQ familiy members, your PCOS cousins, your Endometriosis sisters, your low motility brothers... they need you to see them and love them. Please follow me along this journey (or really difficult hike up a mountain that keeps getting bigger?), and thank you for giving me the space to find my voice. |
Author:Sara Collins has always had a passion for writing. Writing song lyrics for the Backstreet Boys, Short Stories, Poetry, and big chunks of half finished novels. Now she is proud to share her writing around her experiences in infertility. Archives |