Support

supportWhile Matt and I have been lost in the terrible land of infertility, we’ve been the ones guiding our loved ones through it at the same time. As I’ve mentioned before, not many of our loved ones  have experience with infertility and loss, so they are often unsure of what to say or how to support us. I so often hear that someone doesn’t know what to do, or doesn’t know what to say, or doesn’t know how to help, or doesn’t want to do something in case they hurt my feelings, and so on…

Therefore, throughout my journey I have been attempting to help various people understand what this is like for me, and what kind of support is helpful and not helpful. This is not always easy. At times it’s downright uncomfortable. And it can be exhausting. It’s a bit like being blindfolded and at the same time being responsible for safely guiding our loved ones around… It’s confusing and tricky, and just like my loved ones don’t want to hurt my feelings, I don’t want to hurt theirs. It has been very hard to be responsible for educating everyone about what I’m experiencing and what kind of support I need, when at that very moment I am feeling so very broken and lost myself.

But even though it’s hard, and at times, impossible, to do this, I have found overall that the benefits of some of these tough discussions outweigh the drawbacks — sometimes when I share and try to help someone understand, things get better on both sides. So in an effort to give everyone some answers and guidance all at once, I thought it might be time to write a post on support.

However, before I really get into it, I want to be clear that my intent is not to make anyone feel bad for interactions in the past — I know my loved ones care for me and want the best for me. Rather, my intent for this post is to provide some suggestions for general support that I would appreciate. I’m hoping that by sharing some of these, our loved ones can feel less lost themselves and have more confidence in their abilities to support us.

We’ll start with what support is not:

I am not looking for unsolicited advice or opinions. I do not want be told how I should be feeling.  I do not want to have my pain minimized. I am not looking for the silver lining. I do not want to hear about quick fixes for my infertility.

Here are the best things someone can do to support me:

Accept my situation and validate my experience

When I’m struggling and hurting, acknowledgement and acceptance of my situation is very helpful — validation is powerful. Having my feelings accepted and authenticated helps me to feel that my emotions are valid, that my reactions are normal, and that I’m understood. So in my support system, I’m looking for acknowledgement of how much all of this sucks and acceptance of how heartbroken I am. I’m looking for someone to understand and validate the fact that this journey is hard and painful and that my future is full of question marks. I’m looking for the understanding that I’m not always ok, and acceptance that it’s ok to not always be ok. I’m looking for someone to sit with me while I’m in pain and accept me as I am.

Note:
For a great overview of how to sit with someone else’s pain, please visit Psych Central.
For a good overview and explanation on validation, please check out Psychology Today.

Keep in mind the things to say and not to say

Sometimes I feel like when people in my support system don’t know what to say, they either hold back and do nothing (which can be hurtful), or they go overboard and fill the space with advice or optimism (which can also be hurtful). I know this it not intentional… and I know it stems from a place of unease. But I think it could be better…

First of all, sometimes it’s ok to not know what to say — sometimes there isn’t anything that can or should be said. In those cases, acknowledgement, and a silent nod or a hug is what I need. Later, follow up “thinking of you” texts or cards are always appreciated when it feels like other words aren’t useful.

Second, there are ways we can prepare ourselves to know what to say, because sometimes things do need to be said, and saying the right thing can be important.

Many people have written posts on the things to say and not to say to people struggling with infertility and pregnancy loss. Previously on this blog I have shared the same lists over and over, but here I will take the opportunity to share a couple more sources of these lists. Please read them and find one that connects with you, especially if you are someone who has told me in the past, “I don’t know what to say.”

Additionally, my post There Are No Quick Fixes for Infertility highlights some of the things not to say and provides suggestions for better discussions.

Support our decisions

All of the decisions we have made during our infertility journey have been made with the help of our doctors and nurses. No one I know is a better expert on my medical chart and in the field of infertility than my doctor and his team, and I value their expertise and guidance. So when we share a decision we’ve made, please accept it and be at peace with knowing that, with the help of our doctor, we’re choosing the right thing for us at the time.

Ask how you can help

If I share that I’m having a hard time or struggling with something in particular, it may be helpful for you to ask, “How can I help you today?” or “How can I best support you today?”

Matt and I learned many months ago now that this question is a good one for me when I am having a hard time. Before we used this question he used to look at me during my moments of grief like a deer in headlights. Then he’d back away and usually just leave me alone. He was never sure what to do and I ended up feeling abandoned. Once we learned that it was helpful to ask what he could do, we were able to make great improvements in coping together and handling our grief.

This question also allows for a win-win situation: I end up receiving the support I need in that moment, and the other person ends up feeling good about having supported me in the way I most needed, and having confidence that they can help me again in the future.

So you might be wondering, “Yikes. What is she going to say if I ask this?”

The answers I usually give to Matt are along the lines of:

“I want to sit with you and cry.”
“I want to talk about it.”
“I want to be alone.”
“I want to do something else and get my mind off of this.”

… and basically none of these are complicated. All of my loved ones are capable of offering these things to me, even if they are over the phone. Please don’t assume what I need; instead, ask me.

Respect our cautious optimism

In my post The Roller Coaster of Infertility I discuss our need to remain cautiously optimistic. This is still the case for us, and I expect it to remain so. Please do not argue with or challenge my cautious optimism. It’s ok to gently encourage me and tell me that you are hopeful and optimistic, but please don’t pressure me to build up too much optimism. Obviously we are hopeful that the next treatment will work, otherwise we would no longer be pursuing any treatment. It’s just that we’ve learned to be cautious in order to protect our hearts a little bit.

Be present

The bottom line is that no one can fix this for me or guarantee our outcome, and instead of giving advice or minimizing my experience, I need my loved ones to be willing to accept my situation and sit with me in this time of darkness. I won’t be in this place forever, but that’s where I am now, and I’m going to need a lot of love and support while I find my way out. So please don’t back away — be present. Be respectful. Be accepting and supportive. Keep in mind the things to say. Ask how we are doing. Ask how you can help.

Next time you’re wondering what to do, consider sending a text or e-mail saying you’re thinking of me or asking how I am doing. Consider sending a card as a surprise in the mail. Or consider asking if I’d like to meet up or plan a phone date. There are many ways to be present even if we’re far away from each other.

And while you’re doing that, I’ll keep doing my best to get through this, to share about my experience, to support you all when I can, and to keep holding the light and the love.

Thank you all for your support.

For additional reading on support, please visit:

 

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There Are No Quick Fixes for Infertility

no_quick_fixesSo many times when someone we love is upset, we try to make them feel better. We don’t like it when someone is hurting or sad, and we try to fix it. So we might suggest ways for them to look on the bright side, or give them tips on what we have done in that situation to make things better. I think we all do this at times, myself included. And I think for the most part that this is ok. It seems natural to want to help and many times we are very capable of helping a loved one feel better about something or working with them to solve a problem.

However, there are some situations where there isn’t a way to fix the situation, where there isn’t a way to make someone feel better. Infertility and loss are two of these situations… there are no quick fixes that will heal my broken heart or resolve my infertility.

But even though Matt and I know that there are no quick fixes for infertility, it feels as though the rest of the (fertile) world doesn’t really realize this. The practice of “fixing” seems to be so ingrained in our culture that people with good intentions try to fix us even though they know so little about infertility. Many of the quick fixes we hear over and over are actually much more complicated than they seem on the surface. Suggestions, advice, and minimizations roll off tongues without a second thought as to their actual meanings or implications.

Our culture also doesn’t handle grief or other uncomfortable feelings well, so when a “fix” is suggested, I feel like the person is trying to get me to move on and *just* be happy again. It feels like they don’t understand my experience or think of my emotions as valid. But infertility and pregnancy losses are serious and painful, and it takes time to work through and heal from these situations.

Even though I know that most “quick fixes” come from a place of love (while others come from a place of discomfort…), they are problematic. They are unintentionally hurtful. And it would be easier to walk my path if I didn’t have to shield myself from quick fixes all the time, regardless of how well intentioned they were. So in this post I’m hoping to shed some light on some common quick fixes and suggest what might be a better thing to say instead.

“Just relax”

This quick fix is probably the most common one I’ve heard during infertility. It’s also one of the most frustrating ones because it’s so wrong — stress doesn’t cause infertility and relaxing doesn’t cause conception. Infertility and pregnancy loss are medical conditions and they cannot be cured by relaxation. If that were the case, all we would need is a day at the spa and a cup of tea instead of medications, surgeries, and other procedures… Trust me, I’d very much rather go to the spa instead of the doctor’s office, the lab, the pharmacy, and the surgery center, but the fact is that relaxing will not bring me a baby.

When I am told that I *just need to relax*, I like to point out that I *was* relaxed until I failed to get pregnant after months of trying; I was relaxed until my doctor confirmed there was a problem. That’s when I started feeling stressed about conceiving.

For my own mental health I do things to stay calm and relaxed, but *being relaxed* is not going to cure my infertility. We have medical problems that are preventing our conception and if we want to have good odds of conception we’re going to have to treat them. Some people who have experienced infertility do surprisingly conceive after years of trying, but it’s not because they relaxed; it’s because over time, the unlikely event of conception managed to take place.  

Additionally, being told that I *just need to relax* makes me feel like I have done something wrong. Believe me, I second guess my every move every month after I fail to conceive, and I won’t even get into how much guilt I feel over my ectopic pregnancy. But I know deep down that I have not caused my infertility and I did not cause my ectopic pregnancy. But when I’m told that I just need to relax, it incorrectly places the blame on me, and that’s not ok. This is not my fault.

Instead of saying, “Just relax”, I suggest asking how you can help. Assuming relaxation is the only thing I need isn’t ok — it’s better to ask to find out what I need. Sometimes I do need to relax for my own mental health, and sometimes that relaxation is better with a friend by my side; but other times I need to rant or cry, or go on a walk, etc. There are lots of things I need to do to care for myself and treat our medical problem during this time, but *just relaxing* isn’t going to fix this.

For more thoughts on the quick fix “just relax”, please visit this post.

“You can always do IVF”

This is another quick fix I’ve heard over and over, and although I know IVF gives many couples their best chance for success, IVF is not an option for everyone and it is so much more complicated and intense than most people realize — IVF is not a quick or easy fix. I also want to note that the people who have told me, “you can always do IVF” did not go through IVF treatment themselves; rather, they conceived easily and naturally; some even conceived accidentally.

Don’t get me wrong here — IVF is a wonderful opportunity for a chance at conception and pregnancy for some people, and Matt and I are currently preparing for IVF treatment. And I am thankful that we have this option. However, it has taken us a lot of time and consideration to get to the point of being ready for IVF. Coming to the conclusion that IVF should be our next step was a hard one. It was not a quick or easy decision for us to make and we’re still in the process of coming to terms with it.

What most people don’t realize about IVF is that it’s very intense. It’s extremely physically demanding and risky. It’s emotional. It’s expensive. And really I can’t even say too much about it because I have yet to experience it myself… but I do have the medication and appointment calendar in my hand, as well as the preparation check list, and financial estimate; and what I’ll say is this: IVF is intense. So for anyone to suggest that it’s an easy fix for infertility means that they really have no clue what IVF entails.

Additionally, IVF is not always such a miracle. It is not 100% successful — not everyone who undergoes IVF treatment will deliver a baby. And not everyone experiencing infertility is able to undergo IVF treatment — different medical conditions or financial restrictions can prohibit some people from undergoing IVF. IVF is not a quick fix for infertility.

Instead of saying, “You can always do IVF”, it might be better to ask what treatment options the doctor is offering at this point and what we might consider. I had people pushing me into IVF way before (months and months) the words crossed the lips of my doctor, and it was so upsetting to me. And when my doctor did suggest IVF it wasn’t, “You can always do IVF now that everything else has failed you.” No. It was nothing like that. Instead, he asked, “Would you be open to considering IVF as the next step?” His gentle approach was unassuming and respectful, and it would be nice if everyone could speak to us in a similar way.

Note: For those wanting to learn more about IVF, check out this clinical overview of IVF and this post on 10 things about IVF from someone who has experienced it.

“Just adopt”

This quick fix implies that adoption is an easy, painless, risk free process that will end and cure my infertility. It’s not. Adoption only cures childlessness, not infertility. That said, adoption can a wonderful family building option, but like any major decision during infertility, it is not easy or quick. Adoption takes time, it can be very expensive, and it is risky — it may not be physically risky, but it’s emotionally and financially risky. There are no guarantees with adoption, and I know several couples who had their hearts broken during the adoption process before a successful adoption went through.

“Just adopt” also has a partner that I’ve heard: “Just adopt and you’ll get pregnant.” This quick fix is a huge disservice to adoption and adopted children. It implies that adoption only serves as a way to achieve pregnancy, and this is terrible. Someone adopting a child is doing so in order to build their family, not in order to later achieve pregnancy. Sure, a small number of people do later conceive, but just like “relaxing”, adoption is not a cure.  

“Just adopt” also assumes that everyone experiencing infertility wants to, or should, adopt children; but not everyone wants to adopt — and that’s ok. Another frustrating thing about “just adopt” is that, like “you can always do IVF”, the people suggesting this to me have not adopted; they have biological children. And what I’d like to point out here, is that adoption isn’t an option only for infertile people — fertile people can adopt too.

I’d also like to note that when I’m told to “just adopt” I get frustrated because it’s not like this is a new idea or something — I’m well aware of adoption already. I have friends and family who are adopted, and who have adopted. Adoption can be wonderful. But it’s not a quick fix for infertility. So if you feel that adoption is something I should be considering, rest assured knowing that I already know it’s an option for family building and that Matt and I are carefully weighing all of our options at every step.

“At least…”

Pretty much anything that begins with “at least” is a quick fix for my sadness or disappointment that leaves me feeling like my pain has been ignored or minimized. I’ve heard all varieties of “at least…” but here are a few examples:

“At least you can sleep through the night without kids waking you up.”
“At least you can leave the house or leave town when you want.”
“At least you have a great marriage.”
“At least you can afford treatment.”
“At least you got pregnant.”

I’m not going to break these down one by one, because it’s not worth it. I know and understand that when someone tells me one of these things they are intending to help me find the silver lining. They are trying to bring me out of my sadness to be happy again. But it’s not that easy. I can’t *just* forget about what I’m going through. I need to sit with my emotions and work through them.

When I hear “at least…” I feel like my pain is being minimized. Like the person doesn’t think my pain is real, or like I’m overreacting. Sometimes it makes me doubt my own emotions, and other times it makes me feel like the person *just doesn’t understand me*. And I hate feeling like that, because I’m not a teenager; I’m an adult who’s experiencing heartbreak, and my emotions are valid and they are real, and it’s not okay for my experience to be minimized.

When I hear “at least…” it also makes me feel like the person thinks I’m ungrateful for the good things in my life. But I’m not — I’m very grateful for the good things happening in my life. I practice gratitude. I say thank you and I write thank you notes. But doing those things doesn’t cure my broken heart, and they don’t fix my infertility. They are good for my mental health and my perspective on life, but they aren’t a cure-all.

It’s okay to occasionally remind me that there’s light in my life, but there’s a difference between reminding me of happiness and hope, and minimizing my pain. Anything that begins with “at least” sets me up for feeling minimized, so I suggest avoiding that phrase entirely. A better way to remind me of the good things in my life could me to ask me about them and let me find the light… but if you do this, please also follow my lead — if I’m not receptive, let it go for the time being; sometimes I need be with my grief.

“Don’t worry, the sun will come out tomorrow.”

This and other such promises for the future are quick fixes that do not give me as much hope the speaker intended. Promises such as, “You’ll end up with kids, don’t worry” or, “This is going to work! I can feel it!” or, “Everything will work out” end up making me feel like my pain and fear are being minimized.

Infertility causes lots of fear about the future. No one knows what the future holds for me in regards to parenthood. The end result with infertility is completely out of our hands — no one can fix my situation. Not me. Not Matt. Not my loved ones. Not even my doctor. We are working with our medical team closely to select treatments that will give us our best chance for success, but there are no guarantees.

So when someone tells me that I’m going to be okay or that they *just* know it’s going to work out, it’s frustrating because no one can promise me that, and it dismisses my very real fear and pain about my situation. At the end of the day, *all* of our futures are unknown, so it’s not okay to pretend that we know how someone else’s story is going to turn out. It’s better to sit with someone in their moments of pain, and acknowledge that right now things aren’t okay.

Healing is a process that takes time

I know that many of these quick fixes are said with love and with the intention of making me feel better, giving me hope, or reassuring me… and while on the surface they may seem like they should do just that, they don’t. Quick fixes dismiss fears and minimize pain. Quick fixes sometimes assume things that may not be correct, they might pass judgement, or place blame. And overall, quick fixes for infertility do not exist — there is absolutely no quick fix out there for my infertility and loss. The birth of my own living child, or adoption may end up curing my childlessness, but the wounds caused by my infertility and loss will remain. Healing these wounds will take place over time, probably for the rest of my life. Healing will require acceptance, reflection, great love, understanding, and support. But it will not be quick or easy, and it would be wonderful if people would understand this and be willing to sit with me while I grieve and try to heal.

NotePlease also see my support post, which is closely related to this one.

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October: The Awareness Month

october

Most people in the US probably know that that October is Breast Cancer Awareness Month. We’ve all seen the hot pink yogurt lids, hot pink jerseys on athletes, and the messes of hot pink ribbons, lanyards, shirts, and buttons in the grocery store. The hot pink items for breast cancer are hard to miss because they have been embraced in so many places, and by so many products and companies… They are everywhere, especially during October.  

But did you know that in addition to breast cancer, October is “the month” for 24 other issues? For some reason October is the most commemorative, most awareness raising month of the year. Check out wikipedia’s list of commemorative months for the whole list throughout the year. You’ll see that August doesn’t commemorate or bring awareness to any issue, and July is only “National Ice Cream Month”, but October has a whole list, including some very serious problems. Weird, right? Anyway, I have no idea why October is so popular. But what I do want to talk about is two of the issues in October that are close to my heart and don’t get very much attention, but should: domestic violence, and infant and pregnancy loss.

Domestic Violence

October is Domestic Violence Awareness Month. Unlike breast cancer, which I consider to be a “popular” issue, DV is hushed up. No one likes to talk about DV. It’s seen as a problem in the home, in the family; but it’s not — DV is a widespread, societal problem. But if we work hard in our communities, it could be stopped. So in an effort to raise some awareness, I’ll share a bit of information about DV.

Domestic violence is a pattern of behaviors in which one person attempts to gain or maintain power and/or control over their intimate partner. Domestic violence is not always physical abuse; it can also be verbal, emotional, sexual, financial, and spiritual, and it includes stalking.

image source: https://i0.wp.com/www.whitehouse.senate.gov/imo/media/image/VAWA_no_title_640_by_400.png?resize=640%2C400&ssl=1
image source: https://www.whitehouse.senate.gov/imo/media/image/VAWA_no_title_640_by_400.png

Domestic violence is extremely common and has lasting effects:

There are ways you can find help and ways you give help:

Infant and Pregnancy Loss

October is also Infant and Pregnancy Loss Awareness Month, and October 15th is Pregnancy and Infant Loss Remembrance Day. I didn’t know about this until I entered the world of infertility and I started to see it mentioned in posts and on pins on pinterest… and then I experienced my own loss, which made the month personal for us. I see October as an extra opportunity to remember and honor our lost baby. It gives us an opportunity to connect and share with others, to stand together and remember.

image source: http://luminouslightstudio.com/2015/10/october-is-pregnancy-infant-loss-awareness-month/
image source: http://luminouslightstudio.com/2015/10/october-is-pregnancy-infant-loss-awareness-month/

Living children are celebrated everywhere, and certainly on every holiday throughout the year… but lost babies are widely forgotten or ignored, in part, I believe because they make other people uncomfortable. I see October as a way to bring awareness to this problem and to remember lost children. Having an awareness month for infant and pregnancy loss is also validating — it says to me that even though no one wants to talk about it, my loss is real. It also says to me that my experience is not in isolation, even though it feels like it. There are so many grieving parents out there — 1 in 4 women will experience pregnancy loss — and so many are suffering silently and alone. But we can change this as a society. We can remember with each other. We can support parents who are missing their children. We can be more sensitive and compassionate.

If you’re wondering how you can help…

Here are some posts on honoring babies who have been lost:

And here are tips on supporting someone after infant or pregnancy loss. Please keep in mind that support isn’t only important immediately after a loss — healing from the loss of a baby can be a lifelong journey.

For more infant and pregnancy loss awareness images, please visit Luminious Light Studio.

Awareness Matters

Being aware of issues like domestic violence, infant and pregnancy loss, and the many other issues highlighted in October is important because when we know about something that needs to change, we can stand together and make a difference. Even though individually we may feel powerless, together we are strong. Together we can talk about these tough issues. We can learn about difficulties facing our world and do what we can to spread our love and support. We can work to end domestic violence and support its survivors. We can remember the babies who were gone too soon, and comfort and support their grieving parents. We can be more sensitive and inclusive of people facing difficulties or heartache. We can speak up about important issues and get involved with movements that matter.

October is ending soon and it might feel like I’m a bit late to the game for this month of awareness… but really, at the end of the day month, October awareness is just the beginning anyway. There is so much to learn about problems facing our communities and our world, and so many ways we can share love and support, and get involved. Humans are capable of societal change and very great love and compassion… when we want to be. So let’s not waste that potential. Instead, let’s work together to make our world a better place.

2016_10_25_bethechange

 

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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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