isolation

April 24, 2017 2 Comments

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.

Reflections

Infertility is…

March 22, 2017 2 Comments

It was hard to first admit to myself that we were experiencing infertility… By the time I did, we’d already found out I wasn’t ovulating on my own, and as a result I’d been through three cycles of clomid. Even though I had already started fertility treatments, I didn’t consider myself “infertile” because we hadn’t been trying for a whole year yet. Sure, my first diagnosis and those first few treatments were hard, but I told myself that we were just delayed, that everything was going to be fine because they had found a correctable problem.

But when those treatments failed and we hit our year mark of trying, it was time to admit that we were struggling with infertility. At that time we took a few months off treatments to give my body a rest and to give ourselves a break, and I started researching infertility — some things about treatments, of course, but mostly I researched coping with infertility. Because with infertility (at least for me!) there’s a lot more to consider than just the physical problems preventing a healthy pregnancy… Admitting to myself that I was experiencing infertility meant that I was struggling with not only my body and its inability to conceive, but also all of the ways infertility impacted my well being.

The technical description of infertility might only include the failure to conceive or carry a baby to term in a 12 month period, but “infertility” means so much more than that to me. The one line definition I find in the dictionary doesn’t cut it for me. Infertility has wreaked havoc all over my life, and as the months go by, my experience with infertility has packed more and more meaning into the word “infertility”. It has become so compounded in my mind, it means so many things, that I’ve decided to write a series of posts on what my infertility is, what it is like, and what it feels like for me. My posts will by no means be a complete list of what infertility is, nor will they be representative of all infertility experiences; rather, my posts will be about my own experience with infertility. I’m just hoping to shed some light on what my infertility is to help my loved ones understand and to help others who are experiencing infertility feel understood.

So if infertility is more than the inability to conceive or carry a pregnancy to term, what is it? What is my infertility like?

Infertility is living with constant disappointment and uncertainty, in a surreal world where I constantly can’t believe what’s happening to me. It is having to face my own anger and jealousy, and feeling isolated. Infertility is waiting. It is grieving. It is trying to remain hopeful despite months and months of heartache and disappointment. Infertility is being brave enough to face my reality, one day at a time, and decide what to do with this unexpected and unwanted direction.

Reflections

My Invisible Scarlet Letter “I”

October 3, 2016 No Comments

isolation Infertility has turned me into a social outcast, except that no one really knows it but me. My scarlet letter “I” marking me as an infertile is invisible, etched on my heart. It affects me everyday… but since it’s invisible, no one else is really aware of what is happening. In general, I’d say that the far reaching effects of infertility are largely a secret, known only to the invisibly branded members of this horrible club. Most people I know do not understand how painful it is for me to walk around in this fertile world trying to fit in, trying to survive, and trying hard to not let infertility ruin everything. I know that the world isn’t trying to shame me, or intentionally exclude me, but my status as an infertile, grieving mother turns me into an outcast nonetheless: I become awkward when conversing with others and can easily become sad or uncomfortable during conversations; I’m anxious about social interactions, and sometimes I just avoid social gatherings all together.

Conversing with people I don’t know very well or don’t know at all has become very difficult for me because small talk is very uncomfortable. Simple questions from acquaintances or strangers make me uneasy. A “how are you today?” from someone I don’t know makes me wonder if I should lie, “I’m good”; or if I should be honest, “I’m terrible, everything sucks today”; or if I should go somewhere in between, “I’m ok”. And sometimes by the time I’ve decided which answer to give, they are already uncomfortable and probably wondering what is wrong with me. Doesn’t she know how to interact? In the end I usually lie or give an in-between answer… but even the in-between answers make people uncomfortable. “Just ok?” they’ll ask, alarmed. No one likes to hear that someone else is having a bad time, but I don’t like going around pretending everything is great either, just to avoid disappointing strangers, so it’s hard for me to give updates on how I am doing to someone I don’t know very well or at all. Perhaps we as a society could be more accepting of the in-between or bad answers. It would be such a relief to be able to more honestly respond to someone with, “I’m ok”, or “I’m having a bad day”, and instead of alarming them, they could just say that they are sorry and that they hope things get better. Feeling like my reality is acceptable to others would be comforting.

Another isolating question that is frequently asked in small talk is, “Do you have children?” Strangers, new acquaintances, and clients at work all ask me this regularly, and it never fails to make me feel uncomfortable, isolated, and sad. My friend Melinda, who blogs at www.youarerooted.com, wrote a wonderful post about this question… She thoughtfully proposes that instead of asking people if they have children, we ask, “Who makes up your family?” This question is much more inclusive of people in all kinds of different situations, and as a bonus, it doesn’t put me and my reproductive system on the spot. Please give her post a read.

These little changes in small talk could make a big impact on reducing the isolation I have experienced during infertility. Having my not-so-great days accepted, and feeling like Matt, me, and our kitties is a valid type of family would make me feel like less of an outsider. And I suspect that other people who are having a bad day for reasons unrelated to infertility, or who have unique or unconventional family situations would also appreciate feeling like their realities and situations are accepted and valid.

Small talk aside, I don’t fit in at most social gatherings. Nearly everywhere we go and nearly every event we attend, there are families present, or couples talking about their kids. Even if the event is adults only, so many of the conversations of parents is focused on their kids. And I get it — their kids are so important in their lives. In the case of friends and family, I LOVE their children, and at times I even enjoy being with their children. I’m glad that my loved ones are not experiencing infertility and I’m happy that their family building has been joyful. But at the end of the day, I’m left out. My desire for, and lack of children can be so sad and isolating in social situations. I don’t fit in with my broken, grieving, marked heart, and since my scarlet letter “I” is invisible, no one understands why I’m shutting down and making excuses to exit a conversation or leave a party early.

In general, my infertility has led me to limit my participation in the social world, making me feel like an outcast. Sometimes this is due to feeling left out or feeling anxious about social situations, and sometimes it’s because I am unwell due to treatments. I am often not feeling well. During our infertility journey I have declined invitations to numerous parties, happy hours, and other get-togethers for various reasons. And sometimes if we do attend we might leave early if I get overwhelmed or if I am feeling unwell. Either way, I’m left feeling like an outsider — infertility has ruined many events for me that should have been fun.

Even being in public spaces without talking to another person can be difficult while I navigate the world with my invisible scarlet letter “I”. Reminders of what I’m missing are everywhere I go. I see pregnant women all over town, and I avert my eyes because I’m so sad for my non-pregnant tummy. I see parents with their babies and kids everywhere, and I walk the long way around them because seeing their smiling faces make me so sad for Matt and myself. There’s a daycare across the street from my house and all of our neighbors have kids. There are kids at the shelter where I volunteer. More often than not, my clients at work have children. At the grocery store the baby items are in the same aisle as the paper goods, and I walk down the aisle quickly, my eyes focused on the prize — kleenex or toilet paper — while I try to avoid seeing anything intended for a baby. At Target the baby items are across the aisle from some of the home goods. And I won’t even get into how I feel about facebook. The world is filled with families, and things to support and help families, and that’s ok — I know it takes a village to raise a child — but it leaves some people out… and for me, with my infertility etched on my heart, it hurts. I know the world is not intentionally trying to increase my pain, but it still happens. And the only thing I can do is carry on the best I can.

My infertility has also led some of my loved ones to exclude and avoid me — the scarlet letter “I” isn’t always invisible. And before I write any more, I want to be clear that I understand that it’s hard for my loved ones to relate to me and to know what to say, and I know that none of them have intentionally caused me pain. I know they love me and want the best for me. But my infertility has been like an elephant in the room… we all know it’s there, but no one knows what to do with it. I’m socially paralyzed by my infertility, not knowing how much to talk about it and with whom, and I think my loved ones are often afraid of upsetting me by bringing it up. So, to my loved ones, I suggest three things:

Please don’t be afraid to talk to me. I am trying to share and be more approachable… and a big start to that is this blog, so thank you for reading this. Please feel free to discuss with me anything I post here. If you aren’t sure that I’m in a good place to talk, please text first. I like texts and if I’m in a good place for a call, we’ll make it happen.
If you haven’t already, or if you need a refresher, please visit the links on supporting someone with infertility and supporting someone who has experienced pregnancy loss. These are especially helpful if you are struggling with not knowing what to say to me.
Ask me how I’m doing. In our society we often ask complete strangers the question, “How are you today?” without really meaning it, but I have realized that we don’t often ask the people we care most about how they are doing. More often we ask the questions like, “What’s new?” or “What’s going on?” to one of our loved ones… I think because it’s more informal, more friendly… but the questions are different. Asking a loved one, “How are you doing?” invites the recipient to answer how they really are, instead of listing what activities they have been doing lately. It’s a more meaningful check-in, and I instantly feel more connected to my loved one when they ask, “How are you?”

My invisible, or maybe not-always-so-invisible, scarlet letter for infertility has made my interactions with the social world complicated and painful, but I know that I won’t always be in this tough place… I know that infertility won’t last forever and that at some point it will be resolved. Either we will have a child, adopt a child, or not have children. And as I’ve said before, I hope that wherever we end up, Matt and I will be happy and surrounded by love. I’m hopeful that we will heal from our infertility and our pregnancy loss, and that the social world will be less isolating and more inclusive for us in the future… but I also do not expect that transition to be immediate. I do not think I will be “fixed” overnight whenever a resolution to our infertility presents itself. This journey has wounded me deeply and I know I will never be the same. And regardless of what happens, I expect it to take a while for me to heal and be ready to fully engage in social activities. I ask my loved ones now, in advance, to be patient and gentle with me whenever Matt and I end up moving forward.

And until then… I’m doing my best to survive with my invisible scarlet letter “I” etched on my heart. Sometimes the thing I need to remember most is to be gentle with myself. I am doing my best to navigate my path in the world. I may feel isolated, but I know deep down that I’m not alone. There are many others who are also struggling on their paths and feeling isolated, and I’m wishing them strength, peace, and love on their difficult journeys. My loved ones are hoping for the best for us, and I’m thankful for their love and support. And Matt is here, by my side, holding my hand every step of the way, reminding me with his constant love why we’re on this journey.

Coping, Resources

Support Group

September 22, 2016 No Comments

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_yourself Until 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.