GUEST POST By: Jill Ackfield
I do not know any comparison that I can give you to explain what it feels like. There is NOTHING you can compare infertility to. And if you have never gone through it…please, please don’t tell someone who is that you “understand”. Until you live it…you will NEVER understand.
All I can tell you are these things.
Every day I wake up and feel like a failure….like I am abnormal….like I am not a “real” girl…..like I am letting my husband and son down.
I am a failure because no matter what I do, I cannot MAKE my body function “normally”.
I am abnormal because my body doesn’t DO the things it was “designed” to do.
I am not a “real” girl because I cannot naturally ovulate, have a period or conceive a child.
I am letting my husband and son down because I cannot give them the child/sibling they desire. I am the broken link in the chain.
I look at my body in the mirror and wonder where I went wrong? Did I DO something to “break” it? I see physical characteristics that tell me “you are a girl”….but yet my body won’t ACT like a girl. This is VERY confusing.
I live my life cycle day to cycle day.
Every morning that I wake up is a number to me. Today is 15. Some cycle days are more important to me than others.
Cycle day one…..that’s the day I start my period. To those of us in the “infertile world” this is a day of either naive hope or overwhelming sorrow. Hope because it means the start of a new cycle….a new chance…a window of opportunity….a possibility that THIS will be THE cycle. Sorrow….well that’s obvious…..another cycle has passed that we yet again did not conceive.
Cycle day 12ish through 20ish…..those are the days we pray for an egg. I wake up EVERY morning at 6:00 am, 7 days a week, NO MATTER WHAT, to take my temperature…..every day PRAYING for the blessed temperature dip and later sustained rise confirming I did in fact ovulate. For me, this has NEVER happened. I have NEVER seen it. Though month after month, cycle after cycle, I still plot these numbers faithfully and religiously on my chart. I pour over it for hours looking for patterns, looking for signs, looking for…..hope. It’s never there.
Cycle day 28.….well, this is the day…..if we were “normal girls” that we would be preparing to take a pregnancy test (or sadly, preparing for our period to start again).
Other days are important too…..depending on what you are going through. For those of us taking meds to force our bodies to ovulate….cycle days 3 – 7 or 5 – 9 are pretty exciting. (Yea, I said exciting.) Those are the days we get to take our pills! Our Clomid or Femara……whatever the drug of choice is for that particular cycle.
Cycle days 12, 14, 16, etc…follie checks (we call them)…these are the days we go for vaginal (yup….up the coochie) ultrasounds to (hopefully) watch our eggies grow!
Cycle day 21.….that’s the day we get (yes, GET) to do a blood test to confirm ovulation (or not). Notice the terminology throughout my explanation? Sadly, those of us in the “infertile world” LOOK FORWARD to every needle stick (blood test), every vaginal probing (ultrasounds), every doctor appointment, every phone call with test results, every pill we swallow, every injection we take.
We pee on sticks almost DAILY! Whether it be an ovulation predictor or pregnancy test. And we do this EXCITEDLY! We accost ourselves by personally checking our cervical position and cervical mucous on a daily basis. (I’m sure I don’t need to draw you a picture.) We do all of this happily, excitedly and with great diligence and faithfulness, all in the name of a baby we can only dream of.
And every annovulatory cycle…..every negative progesterone draw…..every negative pregnancy test we die a little more inside. We lose a little more hope. We feel a little more like a failure and disappointment to our husbands.
And here is what I need to say to some of you specifically.
To healthcare providers. We are NOT numbers. We are not objects that fill a 15 minute slot in your day and add a little more cushion to your bank account. We are human beings just like you! We think, we feel, we hurt and we NEED YOUR HELP! We gladly add that “cushion to your bank account” because we NEED you. We need your knowledge, your education and your prescription pad. And we also need your time and compassion. We feel very isolated by our problems conceiving and we need someone like you who understands what we mean when we say we feel like we are “broken”.
Aside from RE’s…if you are a general practitioner or an OB/GYN. We need you to remember how much time you spent of your 12+ years of medical school on infertility treatment SPECIFICALLY. I have not attended medical school so I cannot say what portion of your education was focused on that. I have, however, been through nursing school and I know that relatively very little time was allotted to each specific disease process. I would venture a guess to be maybe one chapter in a textbook in the middle of your OB/GYN rotation. We need you to remember that those of us in the “infertile world” have researched and studied NOTHING BUT infertility and it’s treatments for as long as we have been infertile. For me, that is 9 years.
We read every article we can find on the internet, every book we can get our hands on, we participate in support groups and message boards where we get information from a sampling of thousands of girls seeing thousands of doctors all around the world! We know infertility and it’s treatments like the backs of our hands. I have never been through IVF but I can tell you the medications, protocol, risks, success rates, etc. as though I am reciting my address and phone number. We need you to trust the knowledge we have acquired. WE LIVE INFERTILITY. We also need you to realize and remember that above and beyond ALL ELSE…..we KNOW our bodies. We have lived with them a lifetime. We know every twitch, twinge, cramp, flutter, pain and spasm and of those WE know what is normal for us and what is not.
You see “our bodies” in roughly 15 minute increments once or twice a month (if you are seeing us for infertility)…we live with our bodies 24 hours a day 7 days a week. Trust us when we say we know something is abnormal for our body. Trust us when we suggest something we would like to try. Don’t let us hurt ourselves…..but give the knowledge we have acquired about infertility and the time we have spent with our own bodies the benefit of the doubt.
One last thing. We need you to remember that WE LIVE INFERTILITY…..every day is a cycle day to us. Every day we hope means we are a little closer to holding our precious baby in our hands. Every appointment and test and medication we pray is getting us one step closer to fulfilling our dream. We know you are very busy and you see lots of patients, but honestly, those patients don’t matter to us in our quest to overcome infertility.
When you (or one of your office staff) say you are going to call us to give us a test result or schedule a procedure, etc on a certain day or at a certain time, we are sitting next to the phone staring at it and begging it to ring. Our ENTIRE DAY is centered around awaiting your call. We post on our message boards that we are waiting to hear from you. Our friends ask us a hundred times if you have called us yet. We blow off other calls to keep the line clear for you.
The entire journey of infertility is all about WAITING…waiting for a period, waiting to ovulate, waiting to take a pregnancy test, waiting for a procedure, waiting for a doctor appointment, waiting for a test result…..waiting, waiting, waiting……. Please, PLEASE don’t make us wait for a call you (or your staff) is never going to place. If we are supposed to hear from you for whatever reason, please call (or assign a staff member to call, and make SURE they do it) as early as possible.
Next, to well-meaning family members and friends of the infertile.
I need to tell you the same thing, those of us in the “infertile world” LIVE INFERTILITY! Do not tell us to “be patient…it will happen in it’s own time or when it is supposed to”. Do not tell us to “quit thinking about it and it will happen”. Do not tell us for the hundredth time the story of your best friend’s sister who went through 10 years of infertility treatments and finally gave up and started the adoption process and whaddya know?!?!? She turned up pregnant!!
We are NOT your best friend’s sister and we don’t plan on giving up on conceiving our own child right now. Just “not thinking about it” isn’t going to make my ANNOVULATORY body MIRACULOUSLY ovulate.
And as far as being patient…we are some of THE most patient people you will ever know. (see above message to healthcare providers.) All we ever do is WAIT. What we need from you is a shoulder to cry on sometimes and for you to pat us on the back and tell us you hurt for us.
Don’t tell us you understand…you don’t. Don’t tell us that for some reason the timing just isn’t right and it will be better some other time. Don’t ask us every other week if we are pregnant yet. Don’t try to convince us when we are angry with our doctors that they know best. We need you to remember that this is a situation in which we have NO control. We have no control over our bodies or how they are functioning. We have no control over WHEN we will get to add to our families. And unless we are one of the lucky one’s with a doctor who LISTENS to us, we get VERY LITTLE control over our treatment.
We are going to have bad days, days when we feel more frustrated or defeated than others. Be patient with us. And when we are upset because a doctor did not call us back when he said he would, remember, to us, that IS devastating. Do not belittle our frustrations and make us feel as though we are making mountains out of mole hills. Every road block in trying to conceive with infertility to us feels like Mount Everest. We just need you to LISTEN. You can’t fix it. Don’t try. In trying to fix it you will probably just end up saying something that will hurt our already EXTREMELY fragile feelings.
(And remember, that most of us are taking hormones which doesn’t help the emotional side of things.)
We love you very much! We need you and your support and understanding. Our infertility is not your fault and we do not blame you for our struggle. Please don’t take our bad days personally. We need you to be our cheerleader when we have successes and our shoulder when we have failures. We just need you to continue being the wonderful, loving family and friends that you have always been.
This was all “inspired” by the fact that today, for the second time in one week, I feel totally hopeless. I want to give up. And I haven’t totally decided not to as of yet. Why do I feel this way today? It’s as simple as a phone call. Yup, a phone call I was supposed to receive and didn’t. May seem insignificant to some of you, but I am willing to bet that my infertile friends who may be reading this are nodding their heads right now saying, “I know what you mean.”
You see, I was supposed to have a procedure last Friday. One that was going to be very painful and scary. One that I am worried about what the results of it may be. But because I am in the “infertile world” I was looking FORWARD to that. Because I have NO CONTROL over my stupid body, that procedure got cancelled. That was the first time this week I wanted to give up. When the procedure got cancelled my doctor’s nurse told me to call on Monday so we could reschedule. I did and I got her voicemail. After no return call, I called again later and got her. She told me in this call she would talk to the doctor and call me back. She never did.
I called again this morning (Tuesday) and got voicemail again and AGAIN I have still not gotten a call back. Now again…I can see how to some of you this seems insignificant…but this is my 3rd doctor in 2 months. Dr. 3…I have such hopes for. Had. I don’t know anymore. See, the no call back thing, it just makes me feel like for the third time in two months I have hit a dead end. I have no power. The doctors have ALL the power. They have the prescription pad. And that they won’t even return a simple phone call makes me feel like no one will help me.