Thursday, July 11, 2013

the way we were

I used to feel like this community was a family. We were one, big, infertile family - whether we were just starting our journey, in the midst of a pregnancy, struggling with loss, waiting to adopt, or we'd resolved our infertility in one way or another. It didn't matter. We were all here for each other. There was blog reading, commenting, encouragement. It was a good feeling for me, for many of us who couldn't necessarily turn to our own families to validate our feelings about this disease.

Somewhere along the way, something happened. I'm not sure when or how or why. But our community began to fracture. There are people we communicated with on a regular basis who all but vanished when they became parents. There are people who choose child free living who exited stage left because they didn't feel they belonged. Sub-communities and separate communities formed for people who'd been through this particular procedure or that particular "stage" in their infertility journey. Instead of this collective unit, it began to feel like a broken one.

I'm not drawing this conclusion now. I'm stating it now because it's too obvious to ignore. Like the elephant in the room, it's sucking up the clean air to the point where all I can smell is shit. I'm stating a fact that's been somewhat apparent for a while, but that no one has wanted to address. Me included.

I don't know why I didn't want to talk about it. Perhaps, in true family form, I didn't want to call attention to our "dysfunction." You know, it's like your crazy Aunt Millie who won't stop talking about inappropriate things at Thanksgiving dinner. You never want to call attention to her; instead, you accept her for who she is, and you protect her from any outsiders who might think about exposing her faults. I see the ALI community the same way: I see us as a family. We may be dysfunctional at time, but I'll always protect my family.

Except I'm at the point where I'm so disappointed in some of its members, that I don't know if I can continue to protect them anymore.

We used to be about love, acceptance, unity, empathy, and - most of all - support. And while I still see these traits exemplified in many community members, I see it missing in a good number of others. I see anger. I see frustration. I see self-centeredness. The bad things don't necessarily outnumber the good things, but they are visible enough so that it feels as though I'm watching the nightly news: the good stories are becoming overshadowed by the bad, and I'm losing faith.

Here's the thing: I don't want to lose faith. I want to see the positive, and I do. I focus on that, and that's what motivates me to stay a part of this family and to keep fighting for us. It's what's kept me silent for so long. I didn't want to hurt anyone. I didn't want to step on anyone's toes or cause any more anger or frustration to boil over. However, I also don't want this to keep festering inside of me. I don't want to be surface-level with all of you. I want to be real, and these are my feelings: I feel like we've focused too much on ME and not enough on US.

Think back to when you first started this journey. Think back to when you first started blogging or attending support groups or participating in online discussion boards. Do you remember what that felt like to find (at last) a group of people who were going through the same thing? Do you remember what it was like to listen to someone else's story, to hold his or her hand, and to nod your head in agreement? Do you remember what it was like to finally realize that you weren't alone?

Let your mind settle on that moment for a second. That feeling of give and take. That feeling of empathy that you and someone else had for each other. It wasn't a feeling of just "take." It wasn't a feeling of just "give" either. It was a delicate balance: a see-saw of support.

Now, think about what your journey is like today: is it more give or is it more take? Are you constantly blogging and tweeting about your own infertility "adventures" and not taking the time for others? Are you always giving support to others but you don't have anyone who can lend you the support you need during tough times? Do you still support the people who were there for you, before you became a parent, in the same way you did before your child was born? Do you still support people who've resolved their infertility, even if you aren't at the end of your journey?

Wherever you are in your journey, however you fit, do you still try to maintain that balance?

I realize that this is easier said than done. I also realize that some people may perceive me as not having a balance. I want to emphasize that I'm not trying to be a know-it-all or some referee to how we communicate with others in this community. This post isn't meant to pass judgement. It's simply meant to remind us that we are all important. Our stories, our journeys, our feelings - we all matter, and we should all matter to one another. We are a family.

And that is what a family does. Even when we have different paths in life, even when we have differences in opinion - we are still a unit.

22 comments:

Gurlee said...

Blogging has changed for me, so many that I started out with have moved on and there isn't the same sense of community. I know that I contribute to this, I barely blog. I do read and comment, occasionally. I have tried to find some new blogs of folks "in the trenches" and despite my commenting there isn't a give and take. I know sometimes it is all give but it gets a little tiresome. I don't know what is going on because I have contemplated signing up for ICLW and I have noticed the participants are a third of what they once where. Are people taking to other forms of social media? Is this the natural ebb and flow of things?
I will be curious to see what others have to say.
Thanks for keeping your torch lit.

Carli said...

I know I am not as active as I used to be. I still read and I try to comment, especially when someone still in the trenches needs support. But I no longer see traffic on my blog from those who are just beginning their battles (because I am now a mother and mainly blog about my child OR because I rarely post, take your pick).
I know for me, one of the biggest obstacles is HOW I now read and comment (mainly on a tablet) and it is a large pain to type much - but the tablet is how I squeeze the time into my schedule to keep in touch with the community. Perhaps the ebb and flow of technology is partially to blame?

someday-soon said...

I try to offer support and feel like I get it back for the most part. It's hard to accept the people that fall out of our circles for one reason or another. I just try to wish them well and accept the things I can't change.

Marianne said...

Great post and so true. I am for sure feeling that now. When I went through my first IVF I had SO many blog friends supporting me, many going through cycles around the same time I did. This time I feel pretty alone. Several of my friends from back then have commented and supported me (and I SO appreciate it!) but I do not feel the same sense of community I did then. I've even gone so far as to join some online fertility boards to find cycle buddies.
I was so disheartened to see the Cycle Sistas current blog only had 2 blogs listed (me and one other).

Dawn said...

I still read everyone, but now that Reader is gone and I'm using bloglovin it is really hard to comment so while I'm behind the scenes I still like to know what is going on with everyone.

I sometimes felt like a fraud getting pregnant with twins during my first IUI because I never had to have IVF. I felt a little more infertile when I had to have four IUIs to get pregnant the second time, but then I felt like who am I to complain when I have two kids. You know what? Living post infertility sucks too. You still get down that you can't plan your family the way you envisioned, but 99.9% of the time I feel so lucky.

I was never a power blogger, but life has gotten in the way. With a husband working 16 hour days and me being a WAHM and caring for three under three I'm lucky to get a moment and I feel like I don't have too much interesting to say.

BUT I think the hardest thing for me are the bloggers who just disappear. You want to support them and cheer them on, but you know they kind of hate you for getting pregnant. That was tough for me.

I think when you're in the trenches there is always something to blog about, whether it is waiting to O, the 2WW, IPS, or you next text, bloodwork, CD3 follie check, etc...

What I really wish is that infertility survivors would admit that sometimes parenting is really hard. I have kids that are starting to test their independence and it sucks or your baby is up all night and you just want someone to listen. I always felt like I couldn't post that because someone would feel like why should you complain, you have a baby.

I should wrap this up, I just made my own blog post in your comments!

It Is What It Is said...

I'm wondering if something specific happened (or a series of things) that was the catalyst to this.

I think that as lives evolve, as cycles are successful, as babies are born or adopted, as families are formed, readership drops off. There is a 'hook' and an arc to being in the thick of it. It gives folks something to rally behind. A cycle or adoption process has steps and people want to know the outcome, both for the person they are following and for themselves ('if she is successful, I can be, too'). And, once we are hooked we are likely to stick around to see how things evolve. But time constraints and the minutiae of parenting don't usually have the same intensity.

I'm rambling and I do agree that things are much more factioned than they once were but I haven't really found it to be because more are takers than givers.

As a veteran, I WANT to be there for others but find it very difficult to proactively use what little free time I have to seek out new bloggers or those who are just starting out. However, if they find me and they read archived posts and comment with questions, etc., I am so there for them.

Jennifer said...

I understand how you are feeling and I feel that I am one of those that dropped out of blogging when it became clear that I would not be having a child..still in my journey but not ready to go the adoption road so really not having much to say. I did pop in now and again to check on everyone but to be honest as most of the women I followed and commented on went on to have children or adopt I found I had less and less to contribute. I have recently come back to update my blog and unexpectedly to blog about another unlikely pregnancy and the miscarriage that followed with the understanding that few would probably be checking in on me because I had not been doing my part to check in as often. Blogging in the beginning was great because I finally felt understood and was able to understand a whole community of ladies and what they were going through but it did change. My journey has been incredibly painful and life changing and at times I've needed to "pretend" it wasn't happening, where blogging and commenting became incredibly painful to do. I see what you are saying and I wonder about it in myself and others but I also think it's the nature of the journey. People who start at the same place will end up somewhere different and maybe that's ok. In real life I have friends who've gone a different road and our friendship has changed and I think it applies here as well. I sincerely thank all of the ladies who have been there for me over these years and I hope that at some point my comments and support have been helpful to others.

Lollipop Goldstein said...

It's a thought-provoking post. I do think that size comes into play: that as we grew, we broke into smaller groups and those smaller groups became insular instead of bridging. And technology -- as people started reading on phones, they commented less. And as they commented less, the community drifted a bit. If no one comments, how do you know if they're reading? Or to find a new blog to follow?

infertilefollies said...

I've thought about this a lot too. It's good you are posting about it, and I hope that the online community that has been so important to my life can somehow evolve to thrive again.

I can't say I fully understand what's happening, but I have some ideas: I'm a parent now, so the way I relate to and need this community has changed; I see that FB groups have gained traction and are easier to post to and feel connected with; there are other social media people are using to feel connected; it's harder to comment now that I mostly read on my phone; for me I made my blog harder to search for to preserve my anonymity so traffic is slow.

But the beginning of the end, in my opinion, was the PAIL controversy. I feel strongly in support of one side of it, but it doesn't matter, the fact remains that our community was hugely damaged by it, and the fact that it seemed to just be taken way too far.

So sad.

Lori Lavender Luz said...

This question really takes me back to the moment I found this community, even before we became "ALI":

Do you remember what it was like to finally realize that you weren't alone?

So powerful to find a tribe, and heartbreaking to sense it straying from that original need-meeting.

I've been out of the IF trenches for awhile now, and I sometimes forget how that feels to initially come her and find a tribe. Thanks for the reminder what a god-send that can be. It's a responsibility on all of us to give as well as we took.

hope said...

As someone very much still in the trenches (waiting on a beta call from a DE cycle this very moment), I love and adore this community and don’t see these fracture lines. Maybe I am too recent to all of this. I was diagnosed with DOR a year ago and really didn’t start reading blogs until a month or two ago. (I just recently found your blog.) I have found different online communities have different “spirits” and some feel like better fits to me and my needs than others. And many bloggers have really slowed down in postings once they achieve pregnancy. I understand that and still find such great comfort in reading through their old posts to hear about their feelings on their journey. I don’t know really what point I am trying to make – I guess just that I have felt very supported by online friends through everything. I don’t blog but I do try to return this support, mostly by being very active on a few boards. And I love, love, love! your blog. I am still catching up on your older posts (I don’t want to miss any!) but plan to comment more as I get caught up.

Cristy said...

Here from Mel's blog round up. This is something I've been struggling with too. Mainly more on a selfish end that the reason for this disconnect is because I don't know where I belong after years of being in the trenches. But I think your points are solid ones.

The problem is, I don't know the answer. A lot of the bloggers I initially followed have become pretty silent. Some are parenting and feel they don't have anything to contribute, others have divorced and are trying to transition into their new life, others still have simply disappeared.

I think Mel is right that one issue is that the community continues to grow and the way people connect is changing. But part of me also knows that there's been a shift and some resentment between different groups following that shift. And I don't know if healing is possible without everyone being on board to address it (let alone do I understand exactly what the issue is).

KeAnne said...

Important post and good for you for saying what you needed to say. I do try to offer support. A lot of the people I started with down this road are no longer blogging, and when I finally had a chance to rejoin the blogosphere 2 years ago, I had to make new friends, new connections. But I returned as the parent of toddler, so being a part of the community can feel awkward sometimes. I hope that I do provide support and that I give off the vibe that I'm here if anyone needs me. Having severe endo and a uterine anomaly and having built my family via surrogacy, I feel I can understand and provide support for a variety of situations!

Karen said...

Yes. I blogged (as Serenity from Serenity Now!) for 7 years. After I had Owen, I felt strongly that it was my responsibility to give back to the community which had supported me through the darkest days of my life.

But then we attempted #2 and found nothing but heartbreak, and there was nothing left for me. I felt as if I had given everything, too much. All the times I dredged up the energy to comment, support, and there was no one to help when my own journey went belly up.

And that's not to say I blame anyone, either. Not it at all. The community is so big, and technology has moved so much, and really, how often can you comment, "I'm sorry" on someone's sob story of how they couldn't have another child, even if you love them and want to see them happy? It's hard - I'd do the same, even.

Ultimately I needed some distance. I've been living in this place - family building and infertility - for 8 years now. I need a break. It's not healthy for me to keep being reminded of what I don't have - I need to find the happy in the here and now. It's there, I just can't see it.

So I stopped blogging about IF, and I left my space. And though I'm tangentially connected through my other IF friends, I just don't have the emotional energy to keep up giving support when, in the end, it's all I can do to stay on this path of ending treatments.

Anyway, this is a great post; good fodder for thought and discussion.

xoxo

Mrs. Spit said...

This was an incredibly thought provoking post and I thank you.

I left the ALI community when I decided not to pursue having children and I know that I have mixed feelings about where I belong in the community.

J o s e y said...

I think the give and take in the community naturally shifts as your position in the community shifts. Just as sometimes it was hard to read pregnancy updates while still TTC, it's also hard to continually support people that you know don't read YOU anymore. There are very few blogs I have ever "unfollowed" in the past 4 years - but there are definitely blogs I go through phases in commenting on, because sometimes I feel like they don't WANT to hear from me (as someone who now has a child and is pregnant again). I just don't want to be the painful reminder, you know?

At the same point, I DO make a lot of time and effort to support those who really supported me in my darkest times. I only have a handful of close friends who are still TTC#1 from when I first started blogging, but yes, I support them whenever I can/whenever they post. This community has given me so much, and I'll never forget that or take that for granted.

Also, I'd have to respectfully disagree with the commenter above who said she thinks this divide started with the PAIL controversy. That controversy just highlighted a shift - a gap, as it were - that was already happening/existing in the community. Like Mel said, as groups grow in size, people naturally start dividing into smaller "cliques" or whatever. That happens no matter WHAT kind of group you're talking about. SQ is a great resource for IFers - but it's never had a strong space for people on "the other side" - mostly (I think) out of respect for those who find it painful to read about pregnant and parenting while they're still in TTC hell. We all get it! I don't think that the PAIL community had a "voice" or a "safe space" in the IF community though, and that's an important thing to have. No matter HOW you got to the pregnant/parenting phase, you deserve to have a space to go to feel supported. That's why I'm glad that PAIL exists - it's actually helped me to feel like I DO still have a space in this community, even though I now have a child.

Kechara said...

I'm one of the ones Cristy's talking about that's divorcing (will be divorced as soon as I can get a court date) and transitioning into a new life, and that really has changed things for me, particularly because I have people in my real life who read this. So I sure as hell couldn't post about when I was thinking of leaving my husband and the infertility-related ramifications there!! (The finding out he didn't actually want to do IVF and was pretending he did to make me happy, the question of whether to stay with him to do IVF, the question of whether deciding not to do that meant I didn't want to be a mother enough, etc.) And then I couldn't post much because I was starting to date someone new and that wasn't really common knowledge. And now I can't post about my feelings about becoming an infertile stepparent in a few months because it's not common knowledge that it's THAT serious. One of my closest IF friends, who I knew from middle school and who also blogs, encouraged me to keep my blog going to show the alternative path, and so I decided to, but there's so much I can't say. So much so that I've been thinking about starting a new blog that's anonymous, but I don't want to lose the people from the community that read it. I'm thinking of starting it and not posting on my current blog about it but posting on LFCA about it. Anyone reading this, what do you think about that idea? I want to talk, need to talk, but I feel like I can't.

With that not being able to talk openly on my blog has come being less active in the community. Since I'm not going to Blogger to post my own stuff, I'm not seeing my reading pane, so I'm only seeing the one or two that go into my email because they're WordPress. Since I'm not seeing, I'm not commenting. And since I'm not seeing and commenting, I'm apart. Even when I am commenting, I'm sometimes being careful of what I say and at times was even commenting anonymously. I haven't done ICLW since I left my husband. I'm starting to be more active again because my boyfriend is encouraging me to, but having to hold my tongue affects both my reading and my commenting. I didn't mean for it to happen that way, and I do like seeing how many people have been able to build their families while I was gone, but it happened anyway.

Esperanza said...

I feel like I've read this post so many times, over the the almost four years I've been blogging. I wonder if this cycle happens over and over again but the people who play it out don't realize that the rendition they are experiencing is not actually the first one.

I have to say, I never felt like this community was one big happy family. I never had that experience at all. I always attributed that to the fact that I didn't have as difficult an IF/loss experience as most, so I never really got the support that others got, partly because I didn't need it and partly because mine was not the kind of blog that attracted those going through really difficult trauma. The lack of support given me certainly wasn't due to a lack of support being given by me, I know that for sure. There were many years where I just kept on commenting and rarely got anything back. I never held it against anyone, I knew my story wasn't really "worthy" of the big support others got and I didn't expect it.

I've actually come to find that this community moves in waves. It undulates and I undulate right along with it. Sometimes I feel I am giving more than I get, other times I know I'm getting more than I give. Like life, the scales swings from one side to another and I've learned to live with that oscillation. That doesn't mean I always like it, but in the end it has never been reason enough to stop blogging.

I do think the transition to parenting after IF, no matter how you might get there, is a very difficult one for this community. Bloggers struggle with it and their readerships struggles as well.

I was initially very cautious about PAIL and didn't join for a while, or more accurately I did join but then I left (for personal reasons) and finally I went back again. At first I felt frustrated that it seemed I HAD to participate in that community if I wanted to feel I belonged once I had a child. But as I watched what went on there (lurking stage left) I was more and more impressed with what they were doing to create community and finally I swallowed my pride and went back. It might not be exactly what I want or need, but what family/community is? I think without PAIL it is REALLY difficult to be a parenting-after-IF/loss blogger in this community. Those in the trenches just don't know what to do with us.

I think what is ultimately so hard about all of this is that IF is a journey and everyone's journey moves at its own speed. We start blogging with certain people and when our journeys parallel it's easy to be each other's support, but when they diverge it can be very difficult. I for one have always stuck with the women I originally followed, no matter where they are in their journeys, even if they have stopped supporting me as I moved on. I felt that was my responsibility and besides, I wanted to know how they were doing and follow their experiences. I TOTALLY understood when following mine was too much. And while I'm very supportive of those in the trenches that I know and love, I don't actively seek out newcomers to the community because I honestly don't believe my brand of support is wanted (support coming from "the other side"). I also know those people won't want to read me and I admit, that plays a big part in why I don't reach out to them.

Of course this community is made up of people and I believe real friendships are formed. I know I have been "dumped" by fellow bloggers and it has hurt as much as losing a "real" friend. Some of those breaks were hard to walk away from but I've tried hard not to let those few bad experiences color my perception of the community at large. Just because one woman decided to abandon me doesn't mean someone else will. I try to remember that.

Anyway, I supposed I'm just rambling at this point, maybe I always was. This is a very interesting post, one that obviously inspired a lot of thought on my part. Thanks for putting it out there.

Amel said...

Hmmmm...I think this is one problem of a "niche" blog. I mean, even though each infertility journey is unique, but the goal is to have children and because of the uniqueness of this journey in general (with so much heartache and emotional chaos and grief when the goal is unreached over and over again), when people don't feel like they can relate that much anymore or they can't really contribute to the blogger anymore or they're not that close to the blogger anyway, then they "move on".

I have several blogs and my main one is a kind of a journal of my life and I find more people reading that one 'coz it's not a "niche" blog. I find that for my IF blog, there are more people who comment who're more or less in the same trenches as I am: living life without children. Maybe 'coz the posts I write resonate more to them than others.

That doesn't mean I've stopped reading other kinds of IF blogger posts, though, but due to time limit as well, I need to choose what to read. I still occasionally read one or two IF blogs that have moved on to parenting, but then again they rarely comment on my IF blog posts. I understand why they don't comment, though.

Glass Case of Emotion said...

Yup.

I have posted this same post twice in recent months. It is endlessly frustrating.

I agree with Mel in that I think part of the issue is phones. I tried to post on your blog twice this month from my phone. And both times, had trouble. And... for me, bringing out the laptop is often an impossibility with the baby as she has crossed in to toddlerhood.

I think blogger reader going away is a problem.

I think also you raise some valid points too about the IF community at large, that people don't know how to handle others who have "moved on/ graduated." I do think that the PAIL split may have been part of the issue. But, I joined PAIL and still... not a lot of action on my blog.

I remember when I used to get 20+ comments on every post. So rare now.

I personally have stopped checking in on new blogs, I am mainly following up on all of the friends I made over the years. I think that has to do more about time management than anything else.

But it just feels like the camrederie is gone... I am a part of a few FB groups, and I do think that might be part of the issue too as someone else said. It's just more instantaneous... but it's different.

ah. It's just so sad for me too. That's the main takeaway point. I used to really feel like I was part of something.. and now I find myself in mourning for what was... It makes me feel a bit better to know it's not just me.

theyalllived said...

I've been sitting on this for a few days now and have been having a lot of trouble articulating what I wanted to say in response to it.

I know when I started my blog it was mainly so that I could write out all the crap that had happened to me as a way to acknowledge just how horrible everything had been for me. Slowly but surely I found a group of ladies who were in similar circumstances as me and for two years I was lucky to have them be my *support* and my lifeline. The give and take during this time - was incredible.

Now, a good portion of us have resolved by way of having a shift in our lives (ttc successfully, adopted, or decided to live childless) BUT those core friends I have developed new relationships with (Facebook, in real life relationships, texting, email, phone etc). I find it hard to read that people think that when you decide to move on with your life - from what was possibly the WORST time of your life - that you have somehow broken some invisible contract that said you had to stick around forever.

I too don't feel like this was one big happy family at all. I had my time when blogging was EVERYTHING to me and I gave back to my online blog friends during that time. Those ladies were my lifeline during the hell I was living then. Now, I give back to my RPL / adoptive community in other ways and don't really get why people become upset when they have moved on in a portion of their lives that prevents them from having time to blog?!?!

I had an iphone back when I started blogging and certainly am not going to use that as an excuse for not blogging now or commenting. When I wanted to blog or read blogs I would do so at bedtime on the computer and stay up for hours on end! Now, after chasing a toddler all day long, at the end of the day all I want to do is watch some crappy show on tv or just zone out. That's my life now. It's different.

I'm rambling. I mean this with absolutely no disrespect but I guess I just don't understand why some people have lately felt the need to write a post such as yours because a good portion of those people have had some huge shift in their life. I've read that people are disappointed that their comments have diminished, that they don't feel involved, but when you all of a sudden are talking about the milestones of your baby's first steps and not the hell of a miscarriage for example I think it's pretty reasonable to understand why that happened. People unite with those in similar circumstances for the most part. That's why PAIL has been such a godsend for me. No, I don't contribute by posting much at all, but I READ. I have a need to keep my foot in the door, I want to find another girl who has had shitty losses like me and gone on to adopt successfully and say "HEY! How are you?". I can guarantee you this though - I will do so by emailing her now...not commenting on her blog.

I think it's important to remember that people you began blogging with have (from what almost everyone has said) moved on in their life in some way or another and that - is okay.

Dipitie S said...

I try to be supportive, although I often feel separated from the community. Not that anyone has made me feel that way in particular, but because my situation is far removed from most everyone else's. It's nobody's fault, it just is. Sad but true. If we could all end up with happy endings, that would be awesome, but it doesn't work like that...