The fine line of empathy in the world of miscarriage

So, I left Facebook with my ‘real’ personality (and that’s been wonderful, btw!), but I found I really needed my miscarriage support groups so I have a new profile that only sees them.  There was a heated discussion in one group recently that got me thinking about loss and pain and how we empathize with others as we own our own stories.  Someone made a comment that her loss was ‘just as bad’ and she was in ‘just as much pain’ as someone else and that person got very hurt.  All of a sudden, other people join in and you have lots of hurt and hormones flying around trying to evaluate each other’s pain and grief and the ‘equality’ of their loss(es).

I have very mixed feelings on the topic:  Like first off, why does it even matter?  Why do people feel the need to assert that their grief is just as much or more than someone else’s?  Why try to equate things when there is so much background that needs to be considered?  Can’t we just say that it’s different and support each other?

Given the way Society often seems to minimize our losses, I understand in a way.  We hear comments about how ‘it was early, there never was a baby (just a sac), it was in your tube so it wouldn’t have survived anyway, there was something wrong with the baby anyway, etc.’  All of these are comments by people who are really ignorant as to the impact of miscarriage.  This was our BABY we lost.  We had dreams for his/her future.  It’s important to us to not have our grief minimized by hurtful people.  It makes me so angry for my fellow loss moms when I hear that people want to ignore their grief or tell them they shouldn’t be grieving.

On the other hand, it gets tough sometimes.  Do you really think it’s reasonable to equate a chemical pregnancy to a baby born still at 38 weeks? (this was the situation in the miscarriage group, where the rules read “all losses are equal”)  I’ve not lost a baby at full term, but I can’t imagine saying her experience is the same as a chemical pregnancy.  Yes, they both ultimately lost a baby, but really?  I think most people would agree that those aren’t comparable (or am I wrong on this??) From what I saw in the comments, this was just salt in the wound of the woman with a stillborn child and she ultimately left the group and didn’t get the support she needed (which makes me sad and angry on her behalf, but I digress).  A chemical pregnancy and stillbirth are polar opposites along the pregnancy spectrum, so maybe it’s easier to make that call. In the middle weeks, it just starts getting fuzzy.  I don’t think that every week more of gestation means there’s more grief when that precious baby is lost, but it does seem to be a different physical and emotional investment as you move further along.  So I know it’s not a proportional thing, but is this yet another way we are unintentionally minimizing women by just lumping everyone into the same category of ‘miscarriage/loss’?

There are so many gray areas and things that impact our experience: Is it any worse when it happens later or earlier?  Does it hurt more or less that one mom has felt her baby kick and the other hasn’t?  Is it better or worse to have never seen a heartbeat than to have seen a healthy heartbeat?  Is it better or worse to physically have to deliver a baby than to have surgery to remove it?  Is it better to have a grave site or ashes around as tangible memories of our baby or is it better to have had the loss so early that you don’t have all those reminders?

Then there’s the background and other life circumstances-  Is it any easier for the mom who didn’t know she was pregnant yet or the mom who didn’t want to be pregnant at this time or is it harder because that’s an added new element of guilt?  Does a miscarriage hurt more after a couple has struggled to conceive for many months or years?  Does it get worse yet when the baby was a result of expensive reproductive treatments and now they have thousands of dollars in debt as well as a lost baby?  Is it better or worse if you have a child (or children) already?  Better that you have had the opportunity to raise a child already or is it worse because you understand even more the little things you will miss out on since this baby died?  Is it easier because you don’t have idiotic people telling you that ‘at least you have other child(ren)’ as if they are interchangeable?  Obviously these things are not the root cause of the grief, but does it compound it or does it make it more bearable?  I’ll bet it’s different for every woman anyway– but it’s important to remember when we’re relating that we often don’t know the whole story.

And then there’s my situation- recurrent miscarriage.  Does it get worse with each subsequent miscarriage?  I don’t think its a 1:1 situation, where someone who has lost 5 pregnancies has less grief or pain than the woman who has lost 6.  But yet, I do think that someone who has lost 6, 9, 11 babies has a very different experience or perspective than a woman who has lost one.  So for me, yes, the ‘recurrent’ element that gets ignored sometimes by people has added lots of extra mindf**k to my journey and grief.

I’ve had 5 first trimester losses and one second trimester loss.  Every single one hurt, so that’s why I would never say that a miscarriage shouldn’t hurt.  From this perspective I can say that any loss is a loss, regardless of week of gestation, cause, etc.  But I can also say from my experience** that for me the earlier losses were no where near as hard as my 16 week loss.

That’s why I think it’s extra hard when people try to make all losses ‘equal’.  There is such a massive spectrum and so many additional factors that it’s not possible to call them ‘equal’ but it’s also impossible to rank or place on a scale.  But I do think we owe it to each other to acknowledge that there probably is some variation. In the effort to not minimize one woman’s loss, we should take care to not go the opposite direction and minimize those who may have lost a great deal more.  It’s hard to see while in the situation, though, but it’s always important to work on our perspective.

I would never tell anyone who has had a stillbirth that I know exactly how she feels.  I know my latest loss was still 8 full weeks away from even the point of viability and that’s got to be a very different starting level than a woman who loses a baby that could technically survived outside his mother.  Likewise, I would be lying if I said it didn’t hurt when I had a friend who has had one loss at 6 weeks pregnant that she conceived easily/naturally tell me over and over again that she knew ‘exactly how I feel’ (after my 6th miscarriage).   She already had three living children at the point when we were having this discussion-  I appreciated her attempt at empathy, but it also left me hurt and feeling more empty in her attempt to compare our situations.  There’s a level of complexity that divided our experiences.  I’m not minimizing her loss.  She lost a precious baby.  But I’ve lost 6.  How can it be exactly the same and why was she trying to make it the same?  Maybe it is and I’m just too raw right now to feel it.  It’s not a numbers thing, nor do I expect everything to  be equal to mean that people can relate to each other or empathize with each other.  It’s a fine line.

Most of the time I don’t think about this.  It’s when I see the discussion come up that I sometimes like to think it through and try to see all the sides of this.  I hope I didn’t offend or hurt anyone in exploring this topic, that would never be my intention- I am sending lots of love to ALL moms who have lost ANY pregnancy/baby.  And I’m giving myself a gentle reminder that we never know what anyone else has experienced, so maybe the best way to relate is not to directly compare lest we minimize someone unintentionally.

(**I know many other women have different experiences than this, I’m in no way declaring myself more ‘right’ or trying to hurt anyone, I’m just relaying my personal experience)

Advertisements

So very angry

On a scale of 1-10 of anger, I’m at a 100.  If there were a blood test for anger, I would have that critical high value that gets the doctor paged right away to review.  Ninety-nine times out of one hundred if you ask for a word to describe me at that moment, it would be angry.  Ok, ok, you get it.

I looked at my tags that I’ve used in writing this blog for the last few weeks and I am blown away that I hadn’t yet tagged anger.

People are supposed to go through the five stages of Grief, right?  Denial, Anger, Bargaining, Depression and Acceptance

I’ve done that, time and time again.  But I think the stage I sit in most often is the anger one.

I hate being so angry all the time.  I don’t know where to direct it, but I know I’m not doing a good job with it.  I’m not supposed to hold it in, because I’ll lash out at the wrong time, right?  But then how am I supposed to get it out?  The stupid little things get to me like no other

And yet, I also know that anger is all that gets me through at the moment.  It gives me some small semblance of strength to put up with all the BS our surrogacy agency is presenting.  Or just enough strength to call doctors and deal with bills and all the other reminders of all I’ve lost.  I feel like if I didn’t have my anger, I’d be done.  I’d curl into a ball and just give up.

With my head stuck in the sand

I’m coming up on the 8 week mark and the time that has passed really hit me today….when I looked at my dog.

I have a great little dog who was my ‘baby’ for over 1.5 years until I had Sweetie.  He’s a snuggler and I adore him.  But he is high maintenance on the grooming side, and I have religiously taken him into the groomer every month since he was a puppy.

Well, the last trip to the groomer was mid-April, when I told our regular grooming ladies that I was expecting my second baby (they know nothing of the other 5, but I don’t work that into the conversation often).  They have seen Sweetie grow up when I brought her in as we dropped my dog off each month.  They were so happy for me as people tend to be when they hear news of a new baby-to-be.

Well, with my loss in May, my dog obviously didn’t make it in to see the groomer that week.  And then I canceled his June appointment, too.  I just couldn’t bear going in there and having them happily ask me about the baby when I knew I would lose it.  I’ve been putting it off and putting it off, and now I feel horrible.

My poor little guy is so overgrown and matted that he is probably going to need to be shaved.  I’m an awful dog-mama, I was so stuck on my own grief and fear of telling others my sad news in public that I unintentionally neglected him.  I know, he’ll forgive me.  But this is a wake-up call that I can’t totally stick my head in the sand as much as I may want to.

How sensitive should doctors be?

I called my OB’s office today to discuss setting up a pre-conception appointment.  IF I do try again (and this is still a BIG, BIG if), I wanted to understand what medications she would support me being on and how she would manage dosing.  Some things would need to be started far before a positive beta level, so I need to know in advance that we’re ready.  I asked the receptionist if we could meet in the doctor’s office for the consultation instead of one of the pregnancy exam rooms.  I don’t think I’ll do as well concentrating if I have stirrups and an ultrasound machine sitting there when in the back of my mind I’ll be thinking that my baby should be at viability (24 weeks) instead of me sitting there discussing my 8th attempt at pregnancy.  The receptionist was pretty darned rude and said she had never heard of such a request and she didn’t see the point.  I politely asked if she could check with my OB.  Sigh….  Is it really so hard to understand that a grieving mom wouldn’t want to be in a prenatal room to have a sad conversation about trying yet again?

I think most women who have had a miscarriage can point to some moment where a doctor or doctor’s office has been hurtful or insensitive.  I’ve heard some pretty awful stories:

– Getting a call 2 weeks after her D&C to tell her she’s being charged for a missed prenatal appointment that day and reminding her how important prenatal care is for the health of her baby

– Having to sit in the waiting room full of pregnant women waiting to have a follow-up post miscarriage

– Mixing them up with a pregnant patient (asking them to pee in a cup for a protein screen) and then taking it back and saying ‘oh, you’re not pregnant anymore, we don’t care about this for you’

– Hearing some of those awful ‘things not to say to a grieving mother’ straight from your OB (Ie, you’re young, try again- you’ll be pregnant again in no time, the baby would have had a birth defect anyway and you don’t want that)

– Having a receptionist tell you that you need to reschedule your appointment after waiting for the OB for 30 minutes because ‘Your doctor has to go deliver a baby for a new mom right now.  You can wait, she can’t (insert laughter like this is some joke).’

Anyway, what responsibility do doctors have to being sensitive and training their office staff to be thoughtful and sensitive?  I guess I feel that OBs should be held to a very high standard on this.  I think if miscarriage is really as common as they say (1 in 4 women will have a miscarriage) that they should be far better at handling it.  It’s an unfortunate part of working in the field of obstetrics and if they are not regularly addressing sensitivity with their staff, they shouldn’t be practicing.  They should be recommending support groups and making it easier for patients to understand what happened and what their options are.  They should have some times set aside when their office isn’t packed with pregnant women so that those who need to follow-up post miscarriage have a place to go.  At the very least, they could put these women in an exam room right away rather than making her sit there with tons of pregnant women.

The exam rooms should not have a gajillion pictures of babies- is that too much to ask?  My OB has a lot of exam rooms, I think one could easily be dedicated to just gynecological patients (and moms who have had a miscarriage could go there).  Nope, all of them are equipped with ultrasound machines and posters of babies and ultrasounds at various developmental stages.

Another group that I think should be better-  IVF clinics.  I have been into at least 4 different IVF clinic offices that have bulletin boards packed with happy pictures of babies that are the success stories, but how does that feel to the woman who hasn’t had her success story yet?  Shouldn’t IVF professionals be the first people to be sensitive to how a grieving mother or infertile woman might feel?

Am I expecting too much?  I don’t expect the general population to screen out messages that might make a grieving mom feel awful or an infertile woman feel sad.  I know that everyone in the world cannot walk around on egg shells around me.  I don’t expect my Facebook feed to be clear of pregnancy announcements or newborn pictures (but I do try to move them off my status feed).  But I really feel like the medical professionals that work with women should take that extra step to being sensitive to all their patients.  What do you think?  Am I being unreasonable?

Thoughts on “Vacation”

I wasn’t sure what to expect being gone on vacation.  I tried not to have high expectations (because we all know where those get us especially once we’ve suffered from recurrent miscarriage), but I think I did have some hopes of what would happen.  Hope that I could just let go and enjoy myself.  Hopes that I could reconnect with nature a bit and heal a little.  Hopes that my husband and I would have some time to just be ‘us’ again.  Sadly, I feel let down on all of these.

I’m not sure why I hoped to enjoy anything… I just feel like a zombie.  Everything is just happening to me and I’m in a daze watching things go by.  So I’m in a lovely tropical foreign country and I just sit there, wishing my life were different.  I can’t enjoy things, it’s just happening to me.  I feel sick when I think about this-  how many people wouldn’t love to go on a vacation like I did.  But it’s not what’s important to me, so I have a terribly hard time even enjoying it a little bit.  I would give up all vacations for the rest of my life to just be 23 weeks pregnant again.  This must be the ‘bargaining’ part of grief, right?

I didn’t need a vacation, I needed a vacation from being me.  From having all these crazy thoughts running through my head.  From waking each morning and being reminded that I’m no longer going to have a baby in a few months.

So when are things going to start having a more positive light?  I’d take a glimmer, a speck, anything…. I have considered starting Zoloft or something like my OB has recommended.  I have been on antidepressants in the past and they have never helped (I always struggled with seasonal depression).  My experience with being on antidepressants is very similar to how I feel already- dazed, very numb and neither high nor low.  Why go on medication to feel about the same as I do already?  But I know this isn’t sustainable- I need things to feel just a bit better.  I need a little light at the end of this endless tunnel.  I hoped vacation would give me that, but it unfortunately didn’t.

On the husband front, whew, that’s another post.  He and I are struggling so badly, I had hoped that vacation time away from our daughter would give us the opportunity to talk some more and reconnect a bit.  We made it through 5 miscarriages and I thought we were going to be one of those couples that were strengthened by infertility/loss.  I guess our past experiences haven’t really helped us as much as I thought after this last loss.  Definitely a topic for another post.