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Feeling Alone

alone

This week is National Infertility Awareness Week (NIAW), and it has been heartening — as it always is — to see so many posts speaking out about infertility.  I’m going to admit that I’ve been struggling with the theme this year and didn’t know if I would write anything.

You are not alone.

It is a wonderful sentiment, and it’s one that many groups — from mental illness to Parkinson’s disease — recite to their members.

On one hand, it’s completely true: you aren’t alone.  12% of the child-bearing age population stands with you in the sense that they are going through a similar situation.

And on the other hand, it is clear that people feel alone.  Or maybe they just feel lonely, misunderstood, separate from the other people around them, even if they can rationally count the number of people in the same situation.

It goes back to something we talk about often.  There has never been a time when we have been more “connected” to other people, especially other like-minded, like-situationed people.  Before social media, you were stuck gathering support from the people around you.  If you lived in a small town or an isolated area, you may have never knowingly met another infertile person.

But now, with the Internet, you’d have to stay offline in order to not meet another person going through the same thing you’re going through.  Through the magic of Google, you can immediately find other people to share the emotional burden of infertility, trade information, or help craft the questions to ask during your first clinic appointment.

So why, with all this connection, do people feel more alone?

Because that’s what I’m seeing on the blogs, though maybe you will disagree because you read other sites.  That often happens: two people, both reading blogs, walk away with two very different understandings of the community.

But my understanding of this community is that, often times, people feel alone in the crowd.  They like that they can meet another person who has also experienced recurrent loss, but they can’t help but also feel divided from the person because they’ve ended up with different endings to their journey.  Or they once felt a part of the community, but now they’re parenting and they no longer feel welcome.  Or they are a single parent by choice lesbian who finds a dearth of materials on the mainstream organizations’ sites that speak to the non-heterosexual, non-coupled experience because of exclusive language.  Or they can’t relate because the other person has mandated insurance coverage whereas they don’t have enough money to start treatments.  There are too many sub-groups within the infertility community who state that the general community doesn’t understand them.

There are too many posts where people speak about feeling alone.

And I think that is the key here.  How do we make people feel as if they aren’t alone?  Because it needs to be more than pointing out numbers.  Of course, you are not alone: there are other patients, doctors, nurses, researchers, social workers, and mental health professionals to help you along the way.  But that doesn’t mean that you won’t walk away from your interactions with these other patients, doctors, nurses, researchers, social workers, and mental health professionals feeling more isolated than you did prior to the interaction.

We need inclusivity — even as deep as the language we use to discuss infertility — so that people don’t feel as if they’ve been marginalized by their own community.  We need mandated coverage so that the burden of treating infertility is shared by the insurance company as it does for a host of other diseases.  We need more support given to all the stages of treatment and beyond so that people don’t feel as if they’ve been shunted out of their community.

You aren’t alone.  The key is making people feel as if they aren’t alone.  What can we do about that?

21 comments

1 Charlotte { 04.22.15 at 7:49 am }

I sort of think that when you are in the trenches of infertility or loss, there is always going to be a period of time when you feel all alone. Like with anything else you may go through that is so deeply personal. We can come to blogs like yours and feel less alone for that time, but when we leave here we are once again alone. Sometimes, there is no other way to be.

2 Mrs. Agony { 04.22.15 at 8:06 am }

Like most things, I think that feeling of alone-ness can be subjective. I belong to another community (not IF, work-related) in which I feel far more alone and others feel super-connected. Some of that is me, because I am not investing enough time in that area of my life. But also: it’s not as important to me as it once was. When it was my whole world, the most important thing I did, I was definitely in the thick of that community and REALLY connected. Now, I’m kind of an outsider looking in.

When it comes to IF, I don’t feel alone at all. I don’t feel like an outsider. But some of this is because my infertility has defined so much of my life in the last four years. I have another, non-anonymous blog for the aforementioned other community to which I belong, and writing on it can be a chore. I don’t feel my words matter as much. But here, in the IF blogosphere, I feel like they do.

Not sure entirely what I’m trying to say. Maybe it’s a case of YMMV?

3 Valery Valentina { 04.22.15 at 8:53 am }

I’m with Charlotte. I think/feel infertility made me feel alone as in “apart from my dream child”. While blogging & talking helps with the I’m not crazy part, comparing one IF situation to the next could make me feel alone again.

4 Savannah { 04.22.15 at 9:39 am }

I started a comment, but then it became quite long. So I’ve decided to turn it into a blog post. I’m still working on it, but until then, here is a post I wrote in January when I decided I no longer could be silent about infertility. http://because-i-cant-have-babies.blogspot.com/2015/01/bridging-infertility-gap.html

5 SRB { 04.22.15 at 10:19 am }

This post has hit me hard. Despite forming genuine friendships with a handful of ALI bloggers that helped me through it all, I have often felt alone in the community. Very alone. Because I didn’t do IVF, or “only” had two losses, or had a “surprise” second child without treatment (the quotation marks are not my own, but applied over and over and over out there). I could say more, but have learned the hard way not to.

I appreciate you noticing this and saying something about it. Ironically, it makes me feel slightly less alone.

6 Savannah { 04.22.15 at 10:24 am }
7 Angela { 04.22.15 at 10:30 am }

This hits such a chord. There are so many subgroups that we do still feel alone. We feel jealousy even among those we share this pain with. And it’s so hard. I wish I had an answer. But I just don’t.

8 Pam/wordgirl { 04.22.15 at 10:45 am }

I wish I had the answer to this. It probably has to do with somehow being more honest in our daily lives, all of us, about our struggles. The various outlets of social media don’t really allow for the kind of honesty that creates true connection.

If we are dealing with grief for instance our society doesn’t know how to embrace grieving and so how can we expect to see that ability in the social media world? I often feel this deep sadness when I look at Facebook for example. There’s a woman I met briefly in a child’s class when Z was the same age as her daughter, less than a year old. She and many women of that group have gone on to have multiple children. This particular woman just had her fourth. And I never even wanted to have four children! But there’s this deep sadness in me that I have an inability to conceive naturally; it separates me from the Conversation in so many subtle ways. Let’s take, for example, My listening to cheesy country music in the car and some song talking about how first You get married, and then the babies come… As if it’s some natural outgrowth of love. Such common cultural constructs. Of course I think I absolutely have to stop following all of the home schooling women on Instagram with their broods of children frolicking under the blossoms of the fruit trees.

Yes to mandated coverage. Yes to opening the ongoing conversation about infertility as a real thing.yes to coming out of the closet in that way, all of us, as difficult as it is. I think in the online world there is a kind of empathy deficit that has arisen. I don’t know why it is and perhaps it’s part of a larger shift in the consciousness. let’s say, for instance, a person were to share their experience or their heart break but they had something the other person reading didn’t have… An opportunity to travel, or to stay at home when the other reader is working. The immediacy of the medium seems to trump The thoughtfulness of stepping back and placing yourself in someone else’s shoes instead of immediately reacting. I don’t know sometimes I wonder if it’s my age. I’m 42 and came to my first interactions online as if I were sitting across the table with someone. I was taking analog behavior and bringing it to the digital world in a way.
I see my 15-year-old and the way his friends interact online and it’s a completely different thing.their online selves in there in person sounds seem often very different. While they seek affirmation online and intimacy and they’re texting with one another I’m not certain that in the public forums they are seeking true support or connection.

Anyway I’m doing this from my phone on dictation and it’s taking forever for me to correct all of the errors so I’m just going to hit publish and apologize in advance.

Xoxo. Always here reading always forever grateful for your community and all that you have done. I’m very serious and telling you that if I had never found stir up Queens I don’t know that I ever would’ve been able to go through IVF.

Love

Pam

9 torthuil { 04.22.15 at 12:18 pm }

A very apt topic to bring up and the comments above are also very interesting. I think part of making a connection is moving beyond shared experience to recognizing that in our feelings and thoughts and reactions, we share something. It is impossible to find someone on social media or in person who is going through the exact same thing (though one can come pretty close). But when one recognizes how infertility or other challenges affect people in their hearts and lives, I think that is when lasting connections happen. And it doesn’t even have to be infertility that creates that kind of sympathy; it could be some other challenge. That was my thought. I know I do feel that bond with many bloggers, even if we are not besties LOL. Just the feeling that I can click on their blog and know that “truth lives here.” I do kind of wish I had also joined an in-person IF support group. Not so much because I wanted the extra support while trying, but because as a parent it would be nice to know other parenting-after-infertility families in my city. For whatever reason I am not good at making friends in “mommy groups” (though I’ve tried. Sort of.) I just don’t feel the same kind of shared interest and connection that I do with other IFfers that I’ve never met in real life. lol.

10 Yvv { 04.22.15 at 12:29 pm }

“You are not alone” sounds rather ominous. It’s just one step away from “big brother is watching.”

and, honestly, i really like being alone.

11 Melissa N. { 04.22.15 at 3:56 pm }

I can definitely relate to this. When I started blogging about our infertility journey in 2008, I had NO IDEA we’d still be in this place, that we would still be childless, that we would go through what we’ve been through in the past 7 years (infertility and non-infertility alike.) And yet, we are, and we have. Many of the fellow bloggers I started out with have moved on, “closed up shop” in some cases, because they didn’t feel like they could relate to their audience any more after having children, or because they no longer had time, or because they had chosen a child-free life instead of continuing to pursue family-building. Additionally, so many people in our “real life” have had numerous children since we first started trying to conceive our first. I oftentimes feel as though I do not fit in — either I am surrounded by women who have children, or, since my husband is pursuing his doctorate, I am surrounded by women who are not yet married and/or are not thinking about having children. I have, on multiple occasions, referred to myself as a tweener. It can most definitely be a lonely place to be.

12 Lauren { 04.22.15 at 4:23 pm }

I loved reading this post. You are so right – the issue is “how do we FEEL less alone?”. It really is a tough question because ultimately we each need to face our journey with its own specific circumstances by ourselves. I sometimes wish that my husband could just get one ultrasound or blood test or hormone injection (or maybe just one injection side effect!), but that is not the way that this whole thing works. I guess despite all of this I still don’t feel alone because of the support team and community I have tried to create around myself.

The insurance issue is a good one to raise here – I don’t understand how if I had cancer or diabetes or a stroke my insurance would pay for my treatment, but because my disease is infertility I am left on my own to deal with that. It really is the definition of unfair.

13 Mali { 04.22.15 at 7:24 pm }

I’ve written a post that essentially said we feel so alone because we don’t talk about it and others don’t either. I felt less alone by connecting with people on the internet – less through blogging (which I have come to later but which I find now gives me lots of comfort even as far down the road as I am) but more through chat rooms and messageboards. I genuinely felt less alone – even though I was aware my particular circumstances were slightly different to all the women I was talking to. At least they understood, at least they didn’t judge. And they gave me the strength to go out into the physical world where I would have felt very alone, without them.

And that’s why I keep blogging, why I think you keep blogging, why many of us keep blogging when we’re “out of the trenches” and living our post-infertility (if you can ever be “post-infertility”) lives – to hope that someone might find us and as a result, feel less alone too.

14 Cristy { 04.22.15 at 10:44 pm }

I’ve been thinking a lot about this theme this year. Mainly as I remember feeling both very alone and also very unalone during different points of this journey. I agree with Mali that a big part is opening up the lines of communication in real life. To actually talk about it. But you also bring up an equally validate point of being alone in the crowd. That we can be the minority in the minority. One could argue we need to work on it, but I also wonder if this just part of the reality, with the only real direction to fixing it being allow everyone to opportunity to share their story.

15 deathstar { 04.23.15 at 11:17 am }

In many areas, I’ve always felt like I wanted to belong the popular clubs – meaning the ones who didn’t want me for one reason or another. Having barriers put up against me was something I got used to and for the most part, they haven’t killed me. Until infertility. That changed me forever. Eventually the concept of “standing alone” , a phrase often used in my Buddhist community helped me redefine myself in a positive way. One to one dialogue cannot be replaced with texting and computers and urls though I have to say reading the words of others’ experiences reached through the computer screen and grabbed my heart in a visceral way. Pam’s right, there is a shocking lack of empathy in the online world and that’s because people refuse to look into each other’s faces and acknowledge one another’s humanity.

16 Amber { 04.24.15 at 1:22 am }

I’ve never thought about it this way but you are so right. Puts a whole new perspective on things.

17 Geochick { 04.24.15 at 10:16 am }

I danced around this in my post without really calling it out. At least, I think I did…but I think I’ve come to a conclusion. We have the ALI community to help us through, but because every infertility journey is inherently different, I think we always will feel alone in some respect. There’s too many variables – like those who didn’t do IVF, those who go through multiple IVFs, or those who get pregnant after 3 IUIs, or those who choose to adopt, or those who choose not to adopt, or those who struggle to accept childlessness.

18 Lori Lavender Luz { 04.24.15 at 3:22 pm }

This is such an interesting phenomenon, that “people feel alone in the crowd.” There seems to be a human propensity to find both similarities and difference. Which one will a particular person focus on in a particular circumstance?

And how much of this is the person and how much of it is the crowd?

I think a community can strive to offer the most thirst-slacking water possible, but it’s up to each person to drink, to make the watering hole her/his Cheers place.

19 Justine { 04.25.15 at 10:02 pm }

Thanks for this, Mel.

I think the one thing social media does to us, unfortunately, is invite us to draw comparisons. While it offers us the opportunity to tell our stories, and comment in support, I think that a lot of people who do stop to comment (and that’s another problem: the lack of commenting, feeling like we’re shouting into the wind, even when we are part of a “community”) as either “I identify” or “I don’t identify.” While these responses are a good start, what they don’t offer is empathy. Which is sort of what “you’re not alone” is supposed to do, I guess, right? Only saying that doesn’t mean you empathize. Empathy, to me, means allowing yourself to stand in someone else’s shoes even if your experience *isn’t* the same. It’s up to us develop our voices, but also to learn how to listen in ways that go beyond simple identification. And yes, maybe we’re part of a community, but we need to see that community as a diaspora.

There’s a lot of other places where this gap in empathy could go a long way towards connecting people.

I do have to admit, though, that my blogging associations over the years HAVE taught me to empathize better. I started with just identifying, but the practice of identity required me to start broadening my understanding, and to stop drawing so many parallels. It was an unexpected gift.

So: yes, we need to continue commenting, but we need to think about how we read, and how we comment, and how we connect … looking not just for identity, but for something more.

20 cindy { 04.27.15 at 12:36 pm }

Hi from ICLW…I think IF is really a lonely place and it mainly comes from the stigma that we put on it. The more we talk about IF the less lonely we will all feel and that we are not alone in the battle.

21 Tiara { 04.29.15 at 7:29 am }

So well said. Thank you

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