The Overuse of Infertility Acronyms

My husband and I are a year deep in our journey with infertility.  I say my husband and I, but it is really me.  I’m the one with the infertility issues.  I have cried, a lot.  I have been angry, a lot.  And I have even thrown my hands in the air (figuratively, mind you) in frustration and surrender.  I have waved the white flag at infertility, only to burn that white flag the very next day, or hour, or minute.

The latest strategy I have cooked up to assist in coping with my frustrations in an effort to relieve some stress has been to visit some infertility forums.  Surely, reading what other women are experiencing as they take a pill to induce bleeding and a pill to induce ovulation over and over will give me some kind of peace through shared experience.  Surely, this will be a way to hear from the women on the front lines of infertility and to gauge how my experience is going in comparison.  Surely, these forums will help alleviate some of my anxiety about the entire process.

Wrong.  Completely wrong.  My forum reading instead felt more like I was reading my very first scientific research publication all over again.  I had to conduct research just to understand what these women were talking about.  CCD4, BFP, BD, DH–these are just a very small sampling of some of the acronyms I saw everywhere I went.  Some of these I could guess at the meaning via context without understanding exactly what the letters represent.  Others, there was not a single conceivable (unintentional pun) meaning in my brain to these acronyms.  Most of these acronyms aren’t even acronyms for the proper terms of things (like AF means Aunt Flow).  I won’t go into the meaning of these, or other acronyms, but for those that would like to know, click here for an alphabetical listing of acronyms with meanings.

It should have been a sign to me when I Google’d ‘infertility acronyms’ and Google returned with about 136,000 results in the span of seconds.  I should have known when I had to decode the very first forum I looked at that this was not the peace-giving experience I was expecting.

After reading, decoding, reading, and decoding some more, I finally had a realization.  All of these women are talking about infertility without talking about infertility!  Sounds insane, I know.  Stick with me.  Most of these women would express some emotion, but only a bare minimum.  Some would make statements like, “I’m worried” or “frustrated” or “hoping”.  The rest of the paragraph-length post would be all about the acronyms.  One woman wants to know if this side effect is normal on X cycle day and on X medication, “Thanks so much for feedback”.  Another woman answers her that it happened to her (insert a bunch of acronyms now) and she has used the same medication five more times since and everything is fine (absolutely paraphrasing here).  Not one of these women are expressing how they really feel about the situation.

I am experiencing an intense amount of pain from the medication I took to try to force my body to ovulate, and it absolutely FREAKS ME OUT!  This is not natural, normal, or okay!  I worry I am doing more harm than good to my already screwed up body.  It isn’t, “Thanks so much for feedback”.  It isn’t a bunch of acronyms, this is my hopes and dreams and view of my future possibly going down the tubes. The woman who wanted to know about a side effect she is experiencing–if she is anything like me she is disappointed, disheartened, sad, frustrated, and a gambit of other emotions that no one is bothering to address, including her.

Why do women that suffer from infertility feel like they can’t talk about the emotional toll along with the medical things?  There is a direct relation between the two.

Is this how I am supposed to cope?  Depersonalize infertility with acronyms?  Have we become such a politically correct society that it isn’t okay to talk about the misery being experiencing?  Or is it out of respect for those that have it worse?  For example, I have secondary infertility, which means that I have had a child, but I can’t conceive another child.  Someone who hasn’t had a child AND can’t conceive a child has a “worse” scenario of infertility.  Does this somehow lessen what I am experiencing?  Does it invalidate my feelings?  I don’t think so.  I still feel them.

I have a challenge I would like to issue.

If you are suffering from infertility, I want to hear the gritty details.  Comment, email me, post on your own blog, I don’t care.  Do what makes you feel better.  Tell me all about those emotions you aren’t telling anyone else about.  I’ll cry right along with you!  It is okay to cry and to wallow for a moment in the emotional toll this is taking on you, your partner, and/or your marriage.  It is okay to talk about pushing back all your financial goals in life because you can’t not try to conceive a baby and insurance doesn’t cover it.

It is okay to say what is really happening, without the acronyms. 

I am on cycle day 19.  I took Clomid 50 mg on cycle days 3-7 for the first time ever.  I get a blood test in 2 more days.  And I am in pain!  And I have felt fifty different emotions, at least, since cycle day 1.  I am disheartened by the side effect of uterine pain, but I am also hopeful that this means my body is finally cooperating more.  I am afraid that this cycle will come and go without a positive pregnancy test.  I am worried that the pain will get worse and my physician won’t allow me to try again.  I am afraid that this pain is a sign that my body is eating up every last egg, and that I will never have another child.

 

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15 Replies to “The Overuse of Infertility Acronyms”

  1. I feel your pain, sister. Not at the secondary infertility part (because that would mean I’d managed to get beyond the primary. That’d be nice. Anyway…), but at the fact that so many are bottling it up or covering it up.
    As for knowing what the acronyms mean, I’d rather not… Mostly because I worry I’ll be just as robotic if I start using them. On the other hand, a little roboticism might help on the really bad days….
    And your secondary infertility is no less painful or important than anyone else’s infertility issues.
    I did about 6 cycles on Clomid with mixed results at best and pain only during ovulation. You might be having a severe reaction (like a non-follicular cyst or possibly even allergic) and you should let your doctor know ASAP.

    1. Thanks for sharing. I called my doc and let her know. She said that I am probably hypersensitive. I get my hormone check Saturday. I could have an ultrasound, but what’s the point? One more bill insurance won’t cover. And it won’t get me what I want. She did tell me if it gets bad enough it starts interfering with daily life to call her, or if I gain 5 lbs in a 24 hour period.

      I resisted medication intervention, hoping all my health changes (I lost 32 lbs., exercise regularly, eat like a health nut) would do the trick. Not yet, but I still keep the hope alive.

  2. I don’t know anything about what you’re going through, except my friend’s daughter went through this, and came through the other side with a daughter. That is my wish for you.

    1. Thank you very much for the kind words. There is power in those words, such as you made me smile.

      I’m glad she got her heart’s desire. If God doesn’t change my situation, maybe He will change my heart.

  3. So glad someone else shares my frustration with acronyms and people beating around the bush! I avoid the use of acronyms as when I first started searching the internet and reading blogs I felt so overwhelmed with all these letters I didn’t understand. If I didn’t understand was I even allowed to be feeling the way I was and was I even sharing the same pain?! I want people to be able to read my ramblings and understand how I feel and what in going through without the need of decoding or extensive research. I hurt and I say I hurt, in no roundabout way.
    Please don’t let anyone, in real life or the blogging world, try and invalidate your feelings about your secondary infertility. It is just as hard as primary infertility.
    Hope blogging gives you some peace.
    D xx

    1. Thank you very much for the read and comment.

      I was so dismayed by all these acronyms. No one seemed willing to talk about where she is at emotionally. I understand that it isn’t always easy to talk about feelings, like when I feel I might be drowning in emotion, but I am convinced that it is just as important to talk about the emotional ups and downs as it is to see a doctor.

  4. Yes there are a lot of acronyms. Maybe they are overused. As for lack of emotion…that’s not something I’ve witnessed. There is so much unknown with infertility that the desire to know – to feel some semblance of CONTROL – is what I believe drives these posts where women are stating their deets (via acronyms) in the desperate hope that someone will say, “Yeah, me too. And now I’m pregnant!” This is not a lack of emotion. Its a fear of opening the floodgates. And the longer it drags on…the more comfortable you become with acronyms. They are even helpful when listed in profiles when first getting to know someone. If you understand the acronyms you are less likely to say something triggering.

      1. I know they can be a lot at first. Very overwhelming. But it’s all just shorthand so you don’t have to type so much. 😉

      2. It was/is very overwhelming indeed for me! I very much feel like the new kid on the block when I have to start decoding. 🙂 The sentiment to just wave a magic wand and give all the infertile people babies doesn’t do much for those people, but the more I read the more I wish I could find that magic wand.

  5. Perhaps acronyms originated when people started trying to fit long complicated histories into signature lines that only allow 300-400 characters. Without acronyms, I could not represent my struggle with primary infertility (male factor infertility, mosaicism for Turner syndrome, endometriosis, Hashimoto’s disease, 2 interuterine inseminations (IUIs) with clomid, 1 Clomid cycle–all negative; 6 IVF cycles, 1 frozen embryo transfer, 1 hysteroscopy, 1 laproscopy, 1 varicocelectomy, 3 pregnancy losses, 4 rounds of pre-implantation genetic diagnosis (PGS/PGD) in the requisite number of characters, I have embraced the use of acronyms from the advent of my participation in online forums, perhaps because I teach a foreign language, I relish writing in a code created by and for sub-fertile women struggling with infertility. Plus, for me, it’s just easier and quicker. When I write m/c, I think “miscarriage,” When I write BFN, I think “big f-ing negative–” I’m not intentionally sanitizing anything. Take a peak at the pages of pages on the Fertile Thoughts multi-cycle IVF forum and you’ll see that the employment of acronyms does not equate a lack of raw emotion. In monthly IVF cycle groups, you’ll find women expressing their utter devastation when they get bad beta results or experience pregnancy loss–with and without acronyms. I am picky about language, however. Every time someone in the media or on a board talks about “implanting embryos” rather than “transferring” them or worse still “implanting eggs,” I cringe a bit. I agree with Fox–things change as you go on.

    1. Thanks for the read and the comments, hoping to hatch.

      Like I said, I am fairly new to infertility. The forums that came up with a Google search on infertility were not what I had expected. You are right about the acronyms having the same feel as learning a foreign language. Predominantly on the sites that I browsed (Fertile Thoughts was not one of them), the women there were answering each other’s specific questions by sharing either their own experience or what a physician had said to them in a similar situation, and most of it was encoded. I found it surprising that neither the question askers nor the answerers were saying much else. Infertility is such an overpoweringly emotional thing for every woman I know and have met that is dealing with infertility, I was a bit startled by all the acronyms. Having reduced space to give as many details as possible does require an alternate way of communicating, and I can definitely understand that this might have been the origin of the acronyms. Maybe I will try again in the future to read more forums. Thank you for your perspective.

  6. I think it’s good to use acronyms in forums, but only if you are familiar with them. It’s just that things get so repetitive that the acronyms help save time and space. However, I rarely use acronyms on my blog because I assume that many people reading the blog may not be familiar with the “lingo” or jargon that is so common on infertility forums.

    1. Thanks Jessica, for the read and the comments.

      I did notice that most blogs spell things out more often, which is nice for the illiterate such as myself. Also, I have noticed blogs tend to be more well-rounded, focusing not just on the medical or situational experience, but focusing on everything as a whole. This is what happened and this was how I felt about it. These type of conversations about infertility are a better fit for me personally, but I can definitely see the need for summarizing acronyms when you are trying to communicate in a space that is limited or on a day that it is just too much to spell it all out again. I’m glad Fox and hopingtohatch commented and gave me their views from their patch of Earth.

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