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What constitutes ok?

07/06/2012

Belle

I will begin this not so happy post with a very happy iPhone photo of Fermi (brown) and Euclid (white) snuggling in the blanket.

While in Birmingham I visited an old friend whom I had not seen in four years. It was great to catch up over tasty local beers at the brewery where he works. Midway through beer No. 2 I felt bold and when asked how my health was I was honest: the maybe lupus is currently at bay, however I recently lost a baby.

My friend was so kind, saying he was so sorry and asking if I was ok. “I’m hanging in there,” I said, and explained that all considering I was doing well.

The conversation evolved to other topics and it was not until later that night that he returned to how I was.

“I mean, how are you really? I know a loss like this  is so hard on a woman, emotionally and hormonally. I know you are not just ‘hanging in there.’ Be real, Belle,” he said.

I was a little floored. What do you mean? Of course I’m doing fine! I assured him that while some days are harder than others, I’m doing quite well and changed the subject back to his new job.

*********************

This morning I was filling out the ream of paperwork for our two consultations in Cincinnati on the 18th. One center requires both Mr. Husband and I to complete a “Psychosocial Inventory.” I’m a little put off by this honestly. My psyche does not have much to do with the empty state of my uterus or bum ovaries, does it?

The inventory is three pages long. I did well for the first few questions. Name, date, years married, years TTC, pregnancies, etc. Then came “How has your experience with infertility affected you emotionally?”

I stared at the page with a blank mind, which those who have been around for a while know is rare. I am, let’s say, verbose.

It has fucked me up royally. I hate my body more than ever before (and let me tell you, that is a lot). It has left me hopeless, lost and an unpleasant person to be around. 

Can I really write that stuff on a psychosocial inventory and expect this doctor to even entertain treating me? He might treat me with a straitjacket. So I played it safe and wrote:

I feel a sense of loss. Sad & tired. It interferes with work and creativity. 

Sort of true.

The next question: “Describe the effects of infertility on your relationship.”

Infertility has fucked us up and not in the good way. 

Nope, don’t think that will fly. How about we play it safe:

Stresses our relationship a lot. Interferes with travel & intimacy. 

Midway on page 2 I find this question: “List the person/persons in your life that provide you with genuine support?”

My first response: My blog readers. And I wrote that. You know why? Because you are truly my only consistent support. My readers are always there, they always have a kind word and are willing to humor me by gushing over my cats. My readers, those people in cyber space whom I will likely never meet, are the glue that holds me together. That kind of sounds pathetic, doesn’t it? I’m sure normal infertiles have a tender mother to talk to, a doting husband, a gaggle of friends in real life offering a shoulder to cry on every time another cycle ends in red.  So I added more.

My blog readers, girlfriends & husband. 

That last one, the husband part, that was only because below my response he has to write his, meaning he will see my answer. So I lied.

The final question before you get to the Yes/No about alcohol, drugs and cigarettes leaves me wanting to cancel the appointment. “What is the most satisfying aspect of your life right now?”

I have absolutely nothing to write here. Nothing. At all. I have cats, but even they are dysfunctional and on antidepressants. I have a job but it leaves me feeling empty. I have parents with whom I have not spoken since they day I saw Pip’s heart had stopped. I have a husband who actually told me to “just let it go” and that he “didn’t want to hear it” when I cried last week that yet another couple in our social circle is pregnant. I live in a house that belongs to my husbands parents. I don’t have my own car. I don’t have any travel coming up because we are too poor and I’m constantly in the midst of some form of fertility treatment that requires needles and garbage up my lady parts.

So you know what I wrote? 

Not being on fertility drugs for the first time in ages. 

And even that is not true. I’m devastated to not be on fertility drugs. I’m so pissed off that I have to sit here in anovulatory hell while my friends get knocked up left and right. I’m angry that my baby died and I have to wait until my “next menstrual cycle” to try again.

According to this “inventory”  I am not ok. I’m so not ok that I lied on my Psychosocial  Inventory. Who the hell does that?

Today I feel like I took 12 steps forward and then 100 steps back, do not pass Go, do not collect baby.

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38 Comments

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  1. Amber #
    July 6, 2012

    Oh belle, I think most of us have felt those craptastic feelings and would have censored them just the same. Infertility makes you crazy if you weren’t before. Don’t feel bad about it.
    What a wonderful, genuine friend who asked for the honest, ugly truth.
    Btw…you are an amazing person who is crafty, sews like no other, loves her cats with a passion, is earthy, and makes cool vegan food. Never underestimate yourself because you haven’t met your baby yet.

    • July 6, 2012

      Thanks Amber, he is a good friend and it is a shame so many years have passed since we last saw each other! I should thank him next time for displaying such good fertile friend behavior. :) And thank you for the compliments.

  2. July 6, 2012

    First of all, you have beautiful cats. I am a lady who appreciates a good cat picture! On the regs, you can find at least 5 web pages open on my phone, all of which contain pictures of cats.

    But now that that’s out of the way…I have a question: How on earth would that stupid questionnaire look any different if it had been responded to honestly by any of us in this shitty boat? Your words were like seeing the thoughts inside my own head spilling out on a screen. Who can be okay when dealing with all of this bullshit? I have a hard time believing anyone if they say infertility hasn’t left them in a deep, dark depressive state.

    I am sending you many, many hugs of understanding from my side of the screen here. This is so totally isolating, but you should know that your openness and honesty has given me strength and made me feel a little less alone in all of this. It’s so bizarre to think that at this stage in my life, it’s these stranger bloggers who I feel I have the most in common with.

    That doesn’t help what you’re going through, but maybe it’s a small comfort knowing that you’re helping others.

    Big hugs to you,

    V.

    • July 6, 2012

      Van! You are back! I just checked your blog and see you are back there, too. I’m glad. I have missed your wit :) Thanks for the support. It makes me feel good to know that by sharing my journey I can help others. Maybe that is the big lesson from all of this? Pretending to be ok and tough is not helping anyone – myself or others. hmmmm.

  3. S #
    July 6, 2012

    Your post made me sad for you because your pain, frustration and anger came through the screen to me with your words. Even though it is completely understandable, I am sorry you are feeling this way.

    One thought about the Psychosocial Inventory: I would hope that the RE does not use this tool to decide whether or not to treat patients but rather, to provide appropriate psychological support to patients who need this in addition to treatment of the physical challenges to conceiving with which they are struggling. (And I would think that this segment of his patient population is likely the majority.) So, viewing it in that light, you could be doing yourself a favor by honestly sharing your feelings with the clinic, even though you may feel that honest answers would reflect poorly on you.

    Just my $.02. Goodness knows we could all use some extra help/support to get through the IF sh1tstorm.

  4. July 6, 2012

    First off, I think plenty of people lie on forms like that – more than you would think. People are a bunch of liars. We really are. Second, I completely understand the emotions and troubles that you’re expressing here, right down to the lie about being happy to not be on fertility drugs. I don’t have parents or family that understand what I’m going through, and no close friends where we live since we just moved here two years ago – right when I had my miscarriage and landed in infertile hell. My husband is my rock, but all of this is really wearing on him lately, so I’m feeling like I can’t talk to him because it just burdens him even more. I had to quit my job several months ago because it was too stressful on top of the IF, so we’re living paycheck to paycheck with no savings left because we spent it all on IVF…I could go on and on. I know how alone you feel. I feel it too. We’re not alone – just isolated. It’s hard to find anyone nearby who can listen and understand what you’re going through. It totally and utterly sucks. I think I’ve decided that ‘functioning’ is okay at this point. As long as I’m actually getting up out of bed in the morning (or even most mornings – weekends don’t always count) and showering and getting dressed and doing daily activities, I’m okay – for now. Keep reminding yourself that this will pass, it won’t always be this way. Hang in there lady. You’re strong, even if you don’t feel like you are at the moment.

    • July 11, 2012

      Oh Meg, your comment could have come straight from my mouth. I understand being uprooted from friends and family all to well. It only makes this more challenging. Thank goodness we have this community, otherwise I shudder to think what might happen. Definitely more baby snatching on subways :) Thank you for the heart-felt comment and letting me know I’m not alone. Nor are you, friend.

  5. Jen #
    July 6, 2012

    Belle, I wish I could jump across the screen of the computer to give you a big hug. I would have done the exact same thing as you and fibbed on the forms. And I’m sure there isn’t an infertile among us who hasn’t felt depressed, alone, unsupported, angry, and completely unsatisfied with life and the shitty hand we’ve been dealt.

    About Cincinnati – what docs are you going to see? I wonder if you’ll see my guy?

    • July 6, 2012

      I was curious about that, too! I’m going to the Institute for Reproductive Health at 12:30 on the 18th and then to Bethesda Fertility Center at 3:30. Bethesda has some excellent success rates listed but no prices on their website, which makes me worry! Who do you see? As an aside, I might be zipping up to Cinci to return some stuff to Anthropology this weekend. Want to meet for coffee?

      • Jen #
        July 6, 2012

        Neither of those are my places (I go to the UC Center for Reproductive Health) but I can definitely give you the scoop on both. And I’d LOVE to meet for coffee this weekend. What day are you thinking about coming up? Let me know and we can figure out a meet-up spot via e-mail!

  6. July 6, 2012

    Ohhhhh Belle! I’m so sorry. I know the pain and devastation make it hard to see, but you are such an inspiration to me. You’re much more positive than I’ve been and your posts recently have been helping me focus on the things I can control right now. I’m sorry Mr. Husband isn’t being the support you need right now. I’m glad he’s supportive of the rest of the stuff and we’ll figure out a way to get him to understand this is a different experience for you than it is for him. I’ll email you in a little but. (((BIG, BIG hugs)))

    • July 6, 2012

      Bit. I’ll email you in a little BIT. ;)

      • July 11, 2012

        Digging through email this morning to find your message. Seems I missed it…

  7. Mo #
    July 6, 2012

    All I can say is I feel you. Right there with you. I hope it gets better and easier soon.
    PS – i feel the same way about my readers. So if you’re crazy, so am I. It means I’m in good company.
    xoxo

    • July 11, 2012

      :) We can all be crazy together. Much better than crazy and lone, I do believe. ((hugs))

  8. July 6, 2012

    Belle,
    I just want you to know that I think you have a lot of courage for responding on the form as you did, even if the responses weren’t what you were truly thinking. On forms like those I usually answer, ‘I’m fine’ and continue to feel alone because no one knows that I am struggling. I hope the doctor at the clinic takes time to read your answers and shows you empathy, kindness, consideration for all you have been through and are feeling, and helps you to feel supported.

    • July 11, 2012

      I hope he does too. I guess it will be a good way to gauge if this is the right clinic for me. If he ignores it, then it is probably not the place that I will find my TLC.

  9. Jen #
    July 6, 2012

    I would have had the same thoughts and feelings about that form. But maybe a little worse. I would have been tempted to say “There are days – too many of them – when I don’t even want to go on.”

    Lately I’ve been too depressed to write on my own blog, but I still follow other blogs because I need that connection with other people who get it. Like you, I find my greatest source of support in the blogging community. And there’s comfort in being able to offer support back. I feel like a useless failure because of infertility, but it makes me feel slightly less useless to be able to offer support to someone else going through this hell.

    Please don’t be hard on yourself for how you’re feeling or for how you answered the questions on the form. Your reactions to what life has dealt you are completely normal. It’s ok for you to not be ok right now. Be gentle with yourself. *hugs*

    • July 11, 2012

      And you give excellent support, Jen. I always appreciate your comments and your posts. I sincerely hope you find light soon. We all go through these dark times when even writing does not lift our spirits. I’m thinking of you these days and look forward to when you feel better and return. Until then, know I’m here for you.

  10. July 6, 2012

    Belle, I’m sorry. It was a long, long time before my husband realized I wasn’t going to ‘just get over’ our other problem. It made things so much harder on me knowing the one person I thought would really be there to help me, wasn’t. I’m glad that we both have our bloggy buddies who really understand and care. I hope that depressing questionnaire leads to you finding the compassionate care you need and deserve.

    • July 11, 2012

      Thanks April. Husbands are challenging, aren’t they? :) Lord knows how Mr. Husband and I would be if I did not have this community to talk to. I’m sure he would have muzzled me months ago – a man can only hear so much about vaginas, you know?!

  11. July 6, 2012

    Belle, I think that those forms are really ridiculous, especially because Mr. Husband was supposed to fill out the form after you. How can you REALLY be honest if that’s the case? I know some women have 100% supportive husbands… but most of us don’t. Anyway, I think you were as honest as you needed to be. We are all here for you, in person or not!

    Hope things go well up in Cinci (I like that abbreviation).

  12. 35life #
    July 6, 2012

    You hit the nail on the head with your responses. Both versions of them. I’d feel the very same way about a questionnaire like that. Just ok, isn’t always ok. I hate that I use that as my go-to response when I’m not. I really hope things go well with your appointment. Having a “next step” always makes me feel better.

  13. July 6, 2012

    I am so sorry for all that you are going through – it is definitely understandable how filling out such a form can bring about such emotions. I often say I am OK when I am not as I feel others do not really want to hear how I am really doing and it is easy to say OK. And I took feel similarly about my bloggy/online friends! I feel closer to many than I do to many people IRL. I do not think it is pathetic at all! Wishing you the best!!

  14. July 6, 2012

    That Psychosocial Inventory sucks — but I would have done the same as you. Lied my ass off! I’m so glad that you can be honest with all of your readers though — everyone needs a place to go and someone to emote to…even (especially) the crappy emotions. I’m still in the grieving process of my own loss (and maybe I always will be?), but I’m hopeful that it gets easier, for you and me both. Here’s hoping that there’s a light at the end of the tunnel…

  15. July 7, 2012

    My heart is breaking for you my friend. I will never get over how unfair this is and how so many good, deserving people have to suffer this pain while other who take it for granted achieve what we want so easily. I wish there was something I could do or say to help you get through this.

    You are a beautiful, strong, incredible woman. And an inspiration to me. I want to take away your pain because you have given me so much. You may not know it but you have helped just as many people as you feel they have helped you. When I think about the women in this community who I have come to love and adore you are one of the first ones that pops in my mind.

    I’m not going to tell you to “hang in there” or “try to relax” because I know you are in an impossible spot right now. But know you are in my thoughts daily and that I believe you will make it through this. You are too strong not to.

    • July 11, 2012

      Oh Trisha, thank you for such kind words. It makes my day better to know that by being open I have helped others. You have no idea how much this means.

  16. July 7, 2012

    I’m so sorry you had to answer that form from hell. What ridiculous questions: like anyone is going to be able to feel Pollyanna-ish after enduring infertility and loss.

    Off-topic: Your writing is beautiful and your photography is stunning. Every time I come here I’m blown away.

    • July 11, 2012

      I take that as a high compliment coming from you! As you are also a fantastic writer. Thank you for the praise, I needed it today.

  17. July 7, 2012

    Neither that “inventory” nor the answers you write on it (truthfully or not) should have the power to proclaim that you are “ok” or “not ok.” I know noone who has experienced infertitily and loss that would say they are “ok.” I agree with Theresa… My inclination would have been to be sarcastic and just let alllll my anger and bitterness shine right on through in my answers. But you took the high road and acted with reserved maturity… doing what many would have done in your shoes. Please don’t let that form (or IF in general) define you in any way. It seems to me that there are a lot of ladies here
    who think the world of you. I think they are right, and… for what it’s worth, crappy form or not, I think this Cinci clinic is it for you… These people are going to make it happen for you. Hang on to that hope as much as you can… we’ll all be pulling for you.

  18. July 7, 2012

    Those sort of assessments are hard. Don’t worry that they won’t treat you, they understand what kind of emotional hell this is. They may just want you to talk to someone.

    Oh, and don’t worry about feeling support from blog readers. I have a couple friends that know my story but I don’t see them often. Other than them I really don’t talk to anyone about this so I too feel my biggest support is from my blog readers.

  19. July 7, 2012

    That’s a brutal form! My first question when you meet with them would be “has anyone you’ve met going through fertility treatments been deemed “ok” from this evaluation?” I’m be curious what they tell you. Because I seriously doubt anyone going through this process is “okay”

    Look, you’ve been through a lot. Miscarriage/infant loss is hard: we’ve lost our children and then are expected to hide it. So on top of grieving, we’re also dealing with hormones/body being out of wack, trying to get through day-to-day life and facing the reality that we will either have to do this again or pick another route (which is no less stressful). Given all that, I think you’re doing beautifully. You’re writing, taking beautiful pictures and living life as best you possibly can. It that makes you crazy, then I’ll join you in the loonie-bin.

    Thinking of you and hoping that your appointment goes very well. Love and light, lady.

  20. July 8, 2012

    “I’m sure normal infertiles have a tender mother to talk to, a doting husband, a gaggle of friends in real life offering a shoulder to cry on every time another cycle ends in red.”

    Actually, I’m sure of the opposite. Most people probably have nobody to talk to at all, not a doting husband or a gaggle of friends or a tender mother. I think that’s why we start blogs, and I think we are the lucky ones. <3

  21. July 9, 2012

    Darn, I commented the other day and see it didn’t post. What I wanted to say is that I am glad that I never had to fill out one of those questionnaires. There is not a doubt in my mind that every one of us would sound straight up bat shit crazy. Either that or totally full of shit. I read these blogs, I have one of these blogs – we are all totally emotionally unstable and stressed and devastated and hurt. And we get to be. It would be interesting to read what everybody responds to those questionnaires…..but if they turned down the crazy/unstable ones they wouldn’t have any business – so I think you are safe. It is so hard to make the leap in the first place, and then failures and losses just make it that much harder. You have every right to feel depressed and sad and like nothing in your life is good at the moment. I have definitely been there, and was there for way longer than I care to have been. I am sorry you are there now, it is nothing more than a shitty place to be.

  22. July 9, 2012

    I found myself tearing up as I read this post, Belle. It was so raw and honest. I commend you for writing it. I know that we each have our own struggles with our health, our marriages, our body image…but I can relate so deeply to what you are feeling, even though I’m not you. Just know that you have your bloggie friends in your corner. I’m glad we can be here to support you.

    • July 11, 2012

      <3 Thanks Sunny! I need to email you soon, Mr. Husband and I are heading west at the end of the year for an adventure. I wonder if we will be close to you so we could meet in IRL?

      • July 11, 2012

        Squeeeee!!!! Anywhere near, sort of near, or kind of far from near but drivable from LA and I will be there! Also, we have a lovely guest room if you guys need a place to stay in LA that is a hop skip and a jump from all of the fun kitchy attractions like Hollywood or Venice beach.

  23. July 12, 2012

    I feel the same way about my readers too. My Hubby and therapist know for a fact I would not be where I am now without you guys and they acknowledge that often. I know it sucks, but it’s OK to not be OK. Getting up to OK is difficult and takes time. Lots of Hugz!

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