I am half hope

While 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.”

• 25 things to say (and not to say) to someone living with infertility
• 12 things not to say to someone with infertility
• How not to be a dick to your infertile friend
• How to care for a friend after miscarriage or stillbirth
• What to say to a friend who has just lost a baby
• 7 things you can do to support a friend after a miscarriage
• 10 ways to honor a friend’s child who has died

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:

• How can I support a friend with infertility
• Supporting an infertile friend — what not do to
• Infertility etiquette 101