I was just talking to someone the other day about how support groups can quickly become a weird competition of who has suffered more. There are a zillion posts on the Pain Olympics, a nonofficial sport where people feel the need to show that they have suffered more, they have endured more, and so their struggle is infinitely harder than anyone else's. It's not productive, and can be outright hurtful. It is the opposite of empathetic.
I hate one-upping. I hate when someone listens to you only to say something like, "Oh you think YOU have it bad? I...." There is always someone who you eventually figure out that your best response is just to smile and nod and say "Oh, yes, how awful" even though you started out with how crappy your weekend was, or a diagnosis of a family member, or something like that. You can't have a real conversation with someone who does this. They listen only to reply and then hijack the conversation.
I feel like in infertility and adoption, this capacity to make it clear that you have it the worst is part of human nature -- it's acting on it, or apologizing when you do, that can make a difference. I have decided to leave support groups because I felt so much like my story wasn't so hopeful anymore, and I started to feel resentful of people sad about failing their first cycle when I knew damn well they'd get pregnant (they almost always did). I wasn't in a position to support people anymore if I was sitting there thinking about all the myriad ways things went wrong for me. But, I didn't say that. I just stayed quiet, or said "that must be hard" and then I left, cried frustrated tears, and decided not to come back.
I saw some seriously empathy-deprived moments in both online and in-person support groups. I saw people start sentences with "at least" -- like, "At least you had 22 eggs retrieved! I had only 4!" Um, what difference does it make how many eggs are retrieved if none of them do anything? I have seen people with one egg fertilized go home with a baby, and someone who had over 20 eggs have cycle after frozen cycle fail and go home with nothing (not just me). Is it so hard to be empathetic? To realize that your diagnosis and someone else's might make cycles look more advantageous, but the end result is the same? It shouldn't be. Everyone in those groups, regardless of whether they're back for a second or third child, are lesbians and so can't physically conceive without medical help, have premature ovarian failure, never found their person until their 40s, never found their person and want a baby to raise on their own, have uterine abnormalities but eggs are fine, have unexplained infertility, or suffer recurrent pregnancy loss -- everyone's there for the same reason. They want a baby and it just won't come easily.
The worst was one time when a member of a support network I was a part of suggested that another member "wasn't infertile enough" because she always got pregnant. Nevermind she ALWAYS MISCARRIED, but this person was sick of hearing someone complaining about how easy it was to get to the pregnancy part, and didn't really listen to the second half which was HOW DEVASTATING IT WAS TO LOSE OVER AND OVER AGAIN. Question: Is it harder to have poor ovarian response or to be a recurrent miscarrier? Answer: BOTH ARE AWFUL. It really bothered me. I did say something because I was so appalled, and then was told that I didn't respect the angry person's right to vent as part of HER support needs. To which I said then maybe send your venting to a very small group and not the whole group minus the person she felt didn't belong, and I was still met with anger. Fastforward to now -- both those women now have at least one baby, and in a twist of irony, I don't have any. Am I mad at them for their success? Nope. Does it hurt that there was this weird competitiveness that I got put in the middle of and tried to smooth over, about who was more infertile than the other, and it turns out I WIN that battle? Sort of, but who really wants to win that kind of contest?
Is telling people how long you've been at it or how many cycles you've completed a form of competitiveness? Is it a way to share your experience, or a badge of honor, something you want everyone to be sure to know? I am guilty of that one. In some ways, now, I want people to know how hard I fought for pregnancy before I realized how bashed in my head was from hitting the wall. I want people to see the scope of our quest, so that if we do call uncle and decide enough is enough and its time to live childfree, people will know that we gave it all we could. I may have good intentions, but I found more than once that people would preface their own experiences with, "Well, I didn't do it for as long as you..." or "We didn't do as many cycles as you..." like somehow their experience was lesser because mine is so extensive (something I don't actually think of as a good thing). Did I make them feel less-than by highlighting how awful our journey has been, how arduous, how lengthy? Or is it my right to present my story as the marathon it is? Is this my own competitiveness, peeking through?
I am finding that infertility isn't the only place where people compare battle scars, and tell you what's "worse." It's not just about how many weeks in you lost, heartbeat or not, pregnancy at all or cycles with no success, how many experimental treatments you tried.
I have had people say that while it's hard to not get picked for a profile opportunity, at least I haven't had a failed match, because that's harder (either from their experience or that ambiguous "someone I know"). Well, I don't doubt that it's terrible to think that you are matched and then go back to square one, of course that would be very, very difficult. But, it seems to diminish the feelings I have about not getting the chance to be picked yet. You can go through adoption and never have a failed match, or you can have one after the other before you are chosen for real. You can go for years without a call and then get The Call, or you can have call after call after call and always be told no. THEY ARE ALL HARD. And, in the end, sometimes the people who well-intentionedly suggest that I could have it harder, or I'm not somehow trying enough through private adoption...they all have babies. They are telling me from the other side how I need to hang in there. Honestly, I have never had someone who is still trying desperately to adopt that one child, maybe the first of several, maybe the only one because of how long they've been at this, tell me I'm not doing enough or things could be harder.
I can learn from those who have gone before me as to the complexities of the hours around birth, the taking placement, the finalization issues, navigating birthparent visits -- so that is incredibly valuable (and I do recognize the well-meaningness of comments). I just sometimes wish people could remember what is was like to be in this limbo, or respect that maybe for us, we have two options -- continue down the adoption path or choose to live childfree after a predetermined period of time, and one is not necessarily worse than the other. I find that being told "Don't give up on your dream!" from someone who achieved theirs already and is looking at it from the perspective of having "made it" bothers me, even though it's meant to offer hope and encouragement. It bothered me when pregnant people would tell me their "secret" to getting pregnant, as though what worked for them would work for me. That's not necessarily competitive, it's more "I made it to the finish line and so can you if you just..." -- a winner's mentality to help make the person still struggling in mile 20 of the marathon feel like there's hope, is sort of how I think they see it. For me it sort of feels like rubbing salt in the wounds, but that all depends on timing. If I've had a recent disappointment, it feels more salty. Other times it can bring hope of a kind, as long as it's not heavy-handed.
I guess it comes down to empathy, and fighting that human nature of competition. It's odd to me that there's this drive to have it the worst, that somehow that makes you better. I see it not just with infertility and adoption but with who works the most hours, whose job sucks the most, who gets the least amount of sleep, whose kids drive them the craziest, whose husbands are the most annoying, etc. Regardless, I wish that instead of offering up an "at least" or a "you think YOU have it bad?" people could stop, and think, and just say, "That really sucks," no matter the subject at hand. Or share in that moment but qualify it with "I don't know exactly how you're feeling but I know how situations like this hurt because..." Because it sucks to feel like you aren't truly being listened to, that you are just being compared with someone else's experience that may or may not actually apply to yours. It doesn't offer true support.
The other day I was talking with my therapist and complaining about some things people say, and she asked, "What could someone say to you that WOULDN'T rub you the wrong way?" A fair question, as it is admittedly a bit of a minefield. However, I immediately said, "I'm sorry you're going through this. I love you, let me give you a hug. This really sucks. Tell me how you feel about this. What can I do to support you right now?" I had a litany, immediately, because I have thought about this a lot. She was a little surprised, but honestly, those responses are much more helpful than the competitiveness or one-upping or at-leasting.
Maybe I should make cards and hand them out, "what to say when shitty things happen." Maybe one could just be one that says "STOP, please. I sense competitiveness. Just listen." Maybe those would cause more problems than they'd solve. If only there was an empathy charm you could cast when things start going south. It would solve a lot of problems.
One of my favorites.
ReplyDelete"Hard is not relative. Hard is hard."
https://www.ted.com/talks/ash_beckham_we_re_all_hiding_something_let_s_find_the_courage_to_open_up/transcript?language=en
What a great message. "Your story is yours to write." True.
DeleteTo be honest: since I have POF, I usually feel like people who get lots (or even some) eggs in a retrieval, or who have frozen embryos, have it easier. That's my instinctive response. I always have to pause the instinct to say "well at least...." As you say, not all eggs fertilize, not all embryos implant. People struggle for different reasons. I'm trying to come to a place where I can own our challenges with a minimum of bitterness, which is complicated by the fact we are still trying, and it does suck to feel hopeless at times. But ultimately this is my existential challenge and while people do help along the way, it's not right to have the expectation that they should always make me feel special and important for my particular challenges.
ReplyDeleteI can totally understand that instinctive response! It was so hard when I was in a group where we routinely shared our follicle information, egg retrieval stats, etc, because you couldn't help but compare and feel like others had it easier in some respect or another. I can logically say that everyone going through infertility no matter the diagnosis has their own challenges, none easier than others, but when you're in the thick of it it's harder. I always had great retrieval numbers and crappy fertilization numbers, and while we had frozens by the end nothing ever stuck for the long haul. So while I had a lot of embryos over time which meant lots of opportunities, I was left empty-handed. I had someone tell me once how unfair it was that I got so many eggs. Virtually everyone who said that to me has a child now, so I guess yeah, I really had it good. :) I remember even comparing beta numbers with others and worrying that mine weren't quite so robust. I think sometimes those groups inadvertently encourage comparison and competition of a sort, which isn't so helpful.
DeleteI'm sorry things are so hard. It's okay to be bitter. I really admire your pausing and not saying the "at least" -- that's hard. I feel for your challenges, because they are so, so hard. I just wish there wasn't that instinct for people to say "at least you got more eggs" or "at least you got pregnant" or whatever, but that would mean not being human, right? Thinking of you!
And this:
ReplyDeletehttp://stillstandingmag.com/2016/07/the-secret-competition-in-the-baby-loss-club/
I absolutely love you and your blog. I've been following you since we started our donor egg journey, and we are now waiting to adopt. I have also had pregnancy losses and lost my tubes to ectopic...I feel like finding your blog was serendipitous
Wow. That was really beautiful. I loved the concept of "phantom loss," which is how I felt about all the embryos that just didn't make it to pregnancy, and every profile opportunity we're not chosen for, without even packing a bag for a possible baby pick-up that doesn't happen. I also loved this: "When we invalidate someone else’s pain, it does not validate our own. And when we invalidate our own pain, it does not validate someone else’s pain." Powerful and wise.
DeleteThank you so much for your kind words...in a way I'm sorry that it's serendipitous because this is not a fun story, but it is lovely to feel a kindredship with someone whose story is similar. Thank you so much!
Some people tell their own stories as a way of relating, I think. Of showing they understand. Then there are those pain Olympic people who always have to have it worse. Not much you can say to them, I agree.
ReplyDeleteI seem to know a lot of people who can't wait to tell you all about themselves but never once ask "how are you doing?" Those people suck too. No matter how bad I feel or whatever, I always make a point to ask about the other person. One-sided people really burn me up. So I distance them.
I think there's a difference between telling your story and insinuating that one way is worse than another, which is the part I have a hard time with. It gets sticky when it's "what worked for me" -- that's sharing, but it's probably my issues that makes that so difficult to hear that someone has the "miracle cure" for my as-of-yet-childless state. Yes, definitely, to the people who always tell you all about themselves and never ask about you, or do it in such a cursory manner that you feel they are just doing it to get back to themselves. That feels pretty shitty. You're smart to distance yourself from one-sided people! Thanks for your thoughts.
DeleteIt's always amazing that people quantify pain. I think where it comes from when people are hurting and are feeling their hurt isn't acknowledged. With infertility, it comes down to comparing cycles, egg retrievals, failures and losses. With other aspects of life, like unemployment, it comes down to feeling like things aren't going to change.
ReplyDeleteThe wake-up call is not realizing others have had it worse, mainly as this plays into the Pain Olympics, but instead recognizing there is hurt. To someone who has never experienced a pregnancy, there's a huge amount of pain. Comparing that to someone who has experienced loss is unfair to both parties. Both are hurting and that hurt is what needs to be acknowledged and allowed to have a voice.
All that said, there are people who will compare no matter what. They suffer from life pain and sadly, no matter how many wants/needs these people checkboff they will never be happy. It's that sad that they go through life loathing themselves so much? That's a contest I forever hope to lose.
I almost feel like it's human nature to constantly compare, to see how you measure up. It's when like you said, the contest is who loses the most and it's verbal (and not internal) and puts people down that I get confounded. I definitely think there's a "my hurt matters the most" mentality that goes into it, thanks for putting that into words so eloquently. I also hope to forever lose in the battle for who hates their life and/or themselves the most. Thanks for your thoughts!
DeleteYou probably already know about Emily McDowell, but just in case, she's got amazing "there's no card for this" greeting cards (a whole subset about infertility), and a book about them: https://emilymcdowell.com/pages/there-is-no-good-card-for-this-book
ReplyDeleteWhat a beautiful post, and what a beautiful, heartbreaking journey you've been on to come to it. It is so hard. People want to fix, or at least encourage, and you have to have a delicate hand. I've made lots of mistakes but I think I've also been able to be there for people from time to time, and I wonder if it's because I suffer from depression. With infertility, I think it's a little bit like depression--encouragement isn't always the right approach, because everybody knows there's really no guarantee for anybody. So at least for me, and for at least a certain group, encouragement feels hollow and can actually draw your attention to all the reasons the "encouraging" comments could be materially wrong. Plus, what infertiles also need to hear is that their problem is "bad" enough to be a part of the community and deserving of support and that there will be support for them if it doesn't ever work out--that this community isn't just another investment they'll lose forever if they never raise a child.
ReplyDeleteI've found the talks and writing by Rabbi Harold Kushner (author of Why Bad Things Happen to Good People) to be extraordinarily enlightening, as a supporter, and--uplifting?--as a griever.
You put it perfectly, though, talking about what you said to your therapist. It is so hard, and so important, to just say it sucks, and you can see it sucks, and that you love them, or that your heart hurts for them, or that you are glad they told you. People in pain need to be heard, not to hear, so say something that feels inadequate, tell them you know there's nothing you can say that would be adequate, and then let their grief and your compassion breathe there in the space you leave. The most helpful thing, or maybe just the most fundamental thing, you can do for them is to take on the burden of the awkward silence, because that tells them that you're making a place for them to do what they need, since all the rest of the time, they're working hard to do what everybody else needs from them.
You have so stolen the post I had written for next week! lol
ReplyDeleteI had to learn a lesson in this when I was a volunteer for the Ectopic Pregnancy Trust, helping women who had had an ectopic pregnancy, or were subsequently trying to conceive or pregnant. I had to completely put my own situation aside, and focus on them. It was good practice in restraint, and compassion!
I had an exchange last year with someone who, whilst lambasting No Kidding bloggers for playing Pain Olympics, didn't realise how desperately hard she was competing.
I 100% agree with you that ultimately, it's all about wanting your pain acknowledged.
I like the expression "Hard is not relative. Hard is hard." I hate competitiveness when it comes to illness, infertility, personal tragedies etc. I work with the worst offender: she will ALWAYS trump your story with one of her own and people can't stand her because of this. Anytime someone has a cold, she has pneumonia. When I was still new I told her I'd had fertility treatment and had no kids - she asked me no questions, just instantly regaled me AT LENGTH of how she'd nearly died having her daughter. Working with such people, and also having a sibling who suffers drama after drama after drama, have really taught me to bite my tongue when I want to say: "yeah but I went through XYZ". I just listen, always, no matter what I feel inside. I'm not pretending I don't feel it: some things are objectively worse, in my opinion; e.g. failing lots of IVF and ending up with no children is objectively worse than going through secondary infertility. I accept that the pain may feel the same, but those things can't be equal, 'materially' can they? But I'd never say it, and I try so, so hard not to show bitterness as it's a horrible thing. I had a hard time with a friend who was TTC at the same time as me who kept conceiving easily but having early miscarriages. She was begging me not to give up IVF - now, I knew she'd have a baby one day, and sure enough she did. I found it very hard not to even tell her that she was different to me (I never really thought "lucky"), but I was angry and bitter that she expected me to carry on pushing the infertility treatment. Anyway, I'll walk away from a pity-party conversation rather than make any comment at all about myself - it's just majorly uncool.
ReplyDeleteSo true, I've come across the competitiveness aspect too. I think when you are going through IVF it can be hard not to compare at times! I used to hate when someone would post something like "oh I'm so upset I only got 12 eggs at my egg retrieval poor me so awful" and I would feel annoyed as someone who is lucky to get more than 2 eggs out! I'd remind myself that every couple is different and like you said you can have loads of eggs but still end up with no baby so you really shouldn't try to compare. I loved that you had a great response when your therapist asked what sort of things people can say that are helpful and not insensitive.
ReplyDelete