Isolation

I was looking for an infertility book at my local big box bookstore the other day and came up empty handed… again.  Over the course of my infertility journey, I have repeatedly visited this store in person or looked online for local availability searching for specific books and I have been unable to find a single one locally. As I left the store feeling annoyed and alone yet again, various thoughts crossed my mind… “Of course they wouldn’t want to taint their perfect pregnancy section with books about infertility or loss” and “I should know better by now” and “Am I really the only one in this town who might want to read books about infertility or loss?”

The answer to that question is definitely NO — one in eight couples have trouble conceiving or maintaining a pregnancy — but after another failed attempt at finding support in my bookstore, I was still left with the feeling that I am very alone. It also makes me feel like our society values, validates, and supports only the topics I find on the bookshelves — pregnancy, childbirth, and parenting, and grieving losses of parents, siblings or a job; but not infertility or pregnancy or baby loss. I know that it may seem like a minor problem, but it’s more than just not being able to find a book — it’s actually a symptom of a huge problem of infertility: isolation. Not being able to buy my books at the store where everyone else can buy their books makes me feel like I don’t belong, and it is just one of the ways in which infertility makes me feel alone and different.

Infertility is isolating because it feels like I’m *the only one* without kids, and as a result, it feels like we do not belong anywhere. Families with children are everywhere. I look around at my community, my neighborhood, and my friends and family, and everywhere I see children… everywhere but here.

Infertility is isolating when I’m around my loved ones and their children — I feel so left out. I’m not in their exclusive mom club, and it hurts of profound sadness, despair, and jealousy. Our children aren’t playing together. We’re not trading clothes and baby toys or signing up for the same swim class. While they move on with their growing families, I’m left behind with my infertility, alone with a broken heart.

Infertility is isolating when people make small talk about family or how my [bad] day is going. In a previous post about isolation, I wrote about how this makes me feel alone and like my experience isn’t acceptable or valid.

Infertility is isolating when people avoid me, do not acknowledge my experience, or do not make space for my grief. My reality is hard for people to accept, and it frequently makes people uncomfortable. Sometimes people avoid me or they avoid acknowledging what is happening to me and focus the conversation on anything else instead. Often people try to fix my infertility or change my feelings instead of accepting my situation and sitting with me while I grieve.

Infertility is isolating because it feels like nobody understands. I feel like no one understands all of the complicated emotions and the extent of my heartache. I feel like no one understands how awful it is to be disappointed month after month, year after year, treatment after treatment, or how devastating it is to lose a pregnancy or to be failed by IVF. I feel like I end up on the defensive too often, trying to defend why I’m still sad, or why something upset me, or why we’re making certain treatment choices. I feel like no one understands how broken I feel.

I have shared a lot about my experience and have provided many resources to try to help my loved ones understand… but I still feel alone, different, and disconnected. No matter what I do or how hard I try, I still feel like no one gets it, no one is comfortable with me, and no one knows what to say (for a refresher on what to do or say, please visit my post on support). The fact that it’s even necessary or important for me to blog about this topic should clearly show just how isolating infertility is — under normal circumstances I would have absolutely no interest in so openly sharing such personal thoughts and feelings, and I wish I did not need to.

Infertility is isolating when I need to give myself a break from social activities. I have written before about how I might decline invitations to social engagements or leave early. Sometimes I’m unwell due to treatment. Sometimes I’m just not up for socializing. Sometimes there is too much focus on children in social situations — I cannot bear watching children for very long or listening to too much conversation about children because it fills me with grief and makes me feel alone.

Infertility is isolating when I need to give myself space from communicating with others. Sometimes I’m not ready to handle follow up questions or unsolicited advice. Sometimes I do not think I can handle rehashing my current situation again — it can be difficult for me to relive my pain over and over. Sometimes I’m not ready to talk or share my feelings. Sometimes I have nothing to say. Regardless of the reason, part of caring for myself sometimes means intentionally creating some distance from others.

On the other hand, sometimes socializing is just what I need, and many of my loved ones are very eager to connect with me. That said, infertility can still be isolating even when I do want to engage socially, so I have found that it is helpful for me to spread out my social engagements and communications. Spreading things out gives me time and space in between connecting with loved ones to be alone with my grief if necessary, to recover if the experience was draining, and to prepare for my next engagement or conversation.

The best things I’ve found for reducing the isolation of infertility are going to support group and reading about infertility. Reading, listening to and sharing with others has helped to validate my feelings and normalize my reactions and experience. Hearing others’ stories reminds me again and again that I am not the only one going through this, and it has been so helpful to feel connected to people who truly get it. Having a safe place for understanding and acceptance has been so meaningful to me. However, I will also admit that the remedy of connecting with others still has its limits — support group has greatly reduced my feelings of isolation, but it has not eliminated them.

I think infertility is so isolating because the grief is very personal. My dreams are not coming true; my family with Matt is not growing; my heart is breaking. My heartache and loss is so deep and intense, and the powerful grief hits me at my core. I feel like no one can truly understand… not even Matt. But I know that is not fair — just as he doesn’t know what my experience is like, I don’t know what his is like. Our experiences are unique and personal, and so is our grief. Over time we have learned that our grieving styles are different and that we often need to grieve and process alone. So even though Matt and I are in this together, sometimes I still feel alone because infertility grief is personal.

On so many levels, infertility is extremely isolating. I constantly feel like the odd one out, the different one, the only one without a child, even though I know that I’m not alone. I know there are many others out there who know the pain of infertility and loss. I know we have loved ones hoping and and despairing along side us. I know that the best ways to reduce my isolation are to stay connected with people who understand and with people who can accept me. But sometimes I still feel alone… alone in the bookstore; alone in my quiet home; alone in this fertile world without children; alone in my heartache, confusion, and disappointment; alone in my grief.

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Support Group

About a year ago a friend suggested I find an infertility support group. She thought it might be helpful… I hadn’t thought of a support group until then, and I was glad she had suggested it. That said, at that time I wasn’t ready for one, but I did keep it in mind. Shortly after that conversation with my friend, we scheduled my laparoscopy. With the treatment of my endometriosis and the thoughts from the doctor that he was optimistic my fertility would improve, we carried on for a few more months alone. However, when that train ran out of track and Dr. 1 sent me away to Dr. 2, we were ready for a support group. Being told that he was out of options for me and that I needed to go see someone else was hard to swallow. Plus, time was ticking away. We had been trying for over a year and half by that time and infertility was taking its toll on us.

I had found the website for Resolve months earlier and remembered that they had a section of their website for support groups. I went back there and quickly found what I was looking for: a support group right here in town. After some phone calls and a face-to-face meeting with the group facilitator who is a therapist, Matt and I were invited to join in at next meeting.

The meetings are probably a little bit like you’d imagine. I had never been to a support group before, so I only had movies and TV to guide my expectations… but they weren’t too far off. I’d say the big differences are that we meet in the living room of an old house that’s used for therapists’ offices, not a church basement or community center; we sit on couches and comfy chairs, not folding chairs; we don’t have a podium, we speak from our seats; and we don’t respond with monotone voices… But we do go around the circle giving updates about how we’re doing, developments in our journey since our last meeting, and what we’d like to talk about that night. We share tips on how to handle an upcoming procedure or what can be done to help our sore injection sites on our tummies and hips. We talk about tough situations with family and friends. We talk about how hard it can be to see other people’s babies and pregnant bellies. We share our fears, our frustrations, our disappointments. We share our anger. We share our grief. We share silence. Sometimes there is no perfect thing to say and just listening, being present, and accepting each other is the comfort we need. Many times we cry together. We hope for each other. We understand each other and support each other.

surround_yourselfUntil I went to support group I felt very alone. None of my close friends or family have been through this, so no one seemed to get it. At my support group though… they get it. They understand. All of our stories are different — no one’s journey is exactly the same, but the underlying love, hopes, and dreams are similar. The fear, frustration, and grief are similar. Because we are all familiar with the roller coaster of infertility, we can support one another and validate each other’s experiences on a deeper level. And the power of validation is enormous. Feeling understood, feeling accepted, and feeling that my emotions and reactions are normal has been so meaningful. Meeting others face-to-face, hearing their stories, and sharing with them has been so healing for me. I know for sure now that I am not alone — at group I feel surrounded with love and support from people who *get it*.

Reading about infertility has been helpful for me, yes, and I know it will continue to be helpful, but joining our support group and being in the presence of people who understand has been one of the very best things Matt and I have done for ourselves during our infertility journey. It connected us with people who understand what this journey is like, and for that I am so grateful. I am so thankful for our facilitator who guides us with understanding, wisdom, kindness, and love. And I am full of gratitude and love for the brave souls in our support group who open their hearts and share with us their stories. Thank you.

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