It's Ok to Not Be Ok

Kate:

There are so many things we could talk about, but two of the things that are all too prevalent in struggling to grow your family are waiting and disappointment. No matter what path you take, it seems like waiting is an inevitable part of the process, and unfortunately most people don't get out of this struggle to become parents without experiencing disappointment. And that can take many different forms, there many different parts of this journey can cause disappointment. Can you talk about that a little bit? 

Chiemi:

Yes, I think those are the two words that really jumped out at us when we were thinking and collaborating about some of the ideas around what this whole journey takes out of us.

From just the diagnosis alone and the processing of what that feels like to have to acknowledge and now deal with something like that. Because it's not the way that I think a lot of couples or individuals assume or dream that they will end up starting a family and growing a family, so that's where I think it's a really important thing to have that support and community, just even being part of a diagnosis like that.

And then just all the information that receiving a diagnosis takes, the googling and the searching and acknowledging your own individual story, which I think is so unique to this whole community. Even though we have so many different people working through this space, it's really an individual journey with unique, individual needs.

So even from the get-go, of having a deal with that, and approaching treatment and deciding, that’s a really nuanced space. Not everyone can have the privilege to do treatment, and we know RNE works tirelessly just trying to make fertility and family building options more accessible to people. So I think we have to be really soft in the wording of when we acknowledge and suggest treatment to people because it's not always something that they're able to receive due considering individual medical cases and financial constraints. 

The emotional toll of family building also needs to be considered. We might be able to do treatment and go through IUIs and IVF, but the toll that takes emotionally, physically, mentally. The exhaustion of just having to contemplate it and starting that protocol is immense. Every step along the road of processing and waiting and just getting to terms with all of that is really where the support is needed for sure.

And as you said, you know, sometimes people say things in a well-meaning way, mostly they might give you advice (you should do this or have you tried this), or seem to assume that some of those paths to parenthood, whether it's fertility treatment, or adoption, or other avenues of building a family, are easy and accessible - financially, emotionally, logistically. It's almost like they have the privilege of thinking it's easy, but for those of us who know what those things entail, we realize that it is not that simple. And I think another big thing that many struggle with is how do we deal with our friends, family and loved ones who want the best for us, but manage to just say or ask the wrong things so much of the time.

Do you have suggestions or thoughts on how to navigate that your community of support might not really understand what you’re going through?

When we think about awareness and advocacy, it really starts with busting a lot of these myths and misconceptions about “just do IVF” or assuming it's a “one-and-done situation”, which seems to be a really big misconception when someone is struggling with infertility. There's this belief that it’s a quick fix and if you have to do IVF, you just do it, then your miracle baby comes, and everything is fine. People have a lack of awareness of the whole process, and I think the grief around the treatment is the biggest one, honestly. 

There’s a lack of understanding about what people go through and how they grieve just even the dream of how this was going to unfold. We didn't expect 10 people to be in a room when we're starting our family so it's good to normalize that. It really is grief that we have to come to terms with, and that even though some things are very common and they happen to almost everyone, it doesn't make it any less difficult to do or to be any less difficult to be in that space. I really like to normalize that this process, the ultrasounds and blood work and all of these things that people go through, they can feel really uncomfortable and that it's okay if that's taking a toll. It's okay to complain and vent and just say “yeah, I'm really exhausted. And I just need a break” or “I need some more comfort and support.”

Yes, being compassionate to yourself is so important, but sometimes the hardest to do. One thing that I think can be helpful is to share with the people around you what you need now, to the extent you know what that is at that time, and what you don't want from them. And that sometimes we have to be a gentle teacher and tell people, “I know you mean well, but that’s a hurtful thing to ask” or “I don’t feel comfortable talking about that.”

Absolutely, and I think we're getting better too on the cultural/social side of what is acceptable these days. I feel like we know not to ask people if they have kids, which I think even a few years ago wasn't acknowledged as a very personal question that actually has a lot of triggers.

And especially in the workspace and having those boundaries, we've talked about sharing with friends and families, but with colleagues, it's a little bit different and sometimes even still people will just default to ‘do you have kids?,’ and you know that sort of small talk that can make it so that people are all of a sudden dealing with a workspace that doesn’t feel safe anymore, and they have to worry about being professional while dealing with all of the complicated emotions that a question like that can bring up.

So, I like the trend now of being more mindful about not asking personal questions.

Yes, my mom is part of a faith community and I went with her to services one year on Mother’s Day and they specifically gave flowers only to the mothers and asked them to stand before the whole group. And I remember just thinking how hard it was for the people in the room that have dealt with, or are dealing with, fertility struggles and loss. And I shared with my mom, which she shared with her faith community, that they needed to find another way to honor those mothers without excluding other people in a way that could be so hurtful. So I think we make progress like even one little bit at a time, and as you would say, make things more compassionate.

That's such a beautiful example of where it was a gentle awareness, a little bit of, “hey, have you thought about how some people in the room might be affected by that?” And I mean, we can all say honestly, we've all been there, when we probably stick our foot in our mouth, but it's the awareness of thinking, “oh my goodness, right, I didn't think of that. Now that I thought about that, I've learned something” and how wonderful that is to just hold space like that for people.

Right and you can't take back what you did or said, but you can change and make it better next time, and that’s how we learn. 

As we said there's so many unfortunate aspects of this journey that can be disappointing and one thing that sticks with me, and I would love to hear your thoughts on this, is that I feel like every person’s truth is valid and is their truth. There are some people who felt that any unsuccessful IVF transfer, for example, was a loss, they were actually grieving that desire, that experience and that hope that was in that embryo. And then I know others wouldn’t describe it as a loss, although obviously, I have never met anyone who isn’t disappointed at the end of an unsuccessful cycle. So could you talk a little bit about that or just how each person's journey is so unique from an emotional perspective and on how they can maybe cope with some of these challenges?

I think what happens sometimes is we start to use words that are very kind of tangible, linked to how early were you, how many weeks were you, how many times have you, and it's almost like we have to earn our spot in this grief conversation. 

And what we're really grieving is the dream that we had attached to. Going through treatment is one of those places where we start to attach so early. We're literally working with days and numbers, and so it’s natural to suddenly feel really emotionally attached to this process because it's your heart and soul. It's everything that you have put into this, and it's a place that I think needs more compassion from people to understand that that kind of loss is definitely a loss. And your identity is really what you're grieving, of “I saw myself in the future with this family in this way” and sometimes we know the gender and we even attach automatically to that story. 

And all of these things are so important and sometimes we can feel like it might not be a big deal in comparison to other things happening in the world.

All those small things, they add up, moments that you really wish had turned out differently, and it's okay to just be sad. It's okay to be sad that it didn't turn out the way you wanted, in the way you want it. Miscarriage and pregnancy loss and embryo loss, it's all so similar in that you had pictured yourself as a parent already and having that dream taken away, it's not that you are just grieving that, but you're grieving having to just start over again. And that's a really hard space too of cumulative loss and different kinds of medical traumas, and in that space sometimes our own voices to ourselves can be the most hurtful ones because we might say “ugh, you should be over this by now,” whatever over this means.

I really believe that how you feel is how you feel, and that all of those feelings are valid. We can't really control the way we feel. We can control our words, we can control our actions, but not our feelings. So I wish we could be gentler to ourselves about those, because the emotions you feel are hard enough. So if on top of that, you also feel guilt for feeling those emotions, then you’re really compounding your suffering. Because I think some of those emotions are unfamiliar to many of us and certainly unwelcome, not just the sadness of course, but also jealousy, anger, and more. Can you talk about some of those?

Yes, I think it's so healthy to talk and normalize all these different responses that we have and reactions that we have to, not even the person, it's never like a personal thing when we, for example, if we saw a pregnancy announcement or see someone with a very obvious bump, it's not them, it's just what that activates inside of us. And I think it's really helpful if we can remind ourselves that these reactions, envy or anger or frustration, are such a natural thing to have. So when we talk about this kind of stuff in sessions, we really want to honor all of those things that are coming up, but also try to take a step back for a second, and get curious. “I wonder what that activation is really trying to signpost me to.” 

So it's such a natural response, so I think instead of wondering “why am I feeling this?” or the guilt and shame around the emotion, we can say, “I wonder what it's telling us?”

It's probably telling us that we actually need to comfort ourselves a bit more. Can we add more support and more hugs and more comforts? And it’s interesting that as soon as we have more of that, it’s like the stress relaxes and we feel less alone. We realize that there are people that do care and that actually there are a whole bunch of people that we can relate to and that do see us and we do belong there. I love thinking of emotions as neither good or bad, but just cues to something.

I love that, nurturing ourselves. I think one of the hardest things about this is that you cannot control the outcome. And that with a lot of things in life, if you try harder, if you want them more, you achieve it. And I see people all the time say, “I had a beautifully graded embryo” or “I did everything right”. We're in some ways the most knowledgeable patients ever, but then we can’t control the outcome, which is so hard, so one thing we can control is how gentle we are to ourselves, how much we nurture ourselves. And as you said, remember that this is the experience right now, but not necessarily forever. And I don’t know the outcome which is really hard, but I just need to be gentle to myself about where I am right now.

We also have to acknowledge that for women, we have a lot of systems that we're working within. And I think without acknowledging that we're already in a culture giving us toxic messages about weight and worth and “work to deserve rest” and even the pressure of adding self care and now it's just another list of things to do. We live in a culture that tells us it’s not our fault, but then sells us 10 million things to help improve ourselves. And it's like, well, which is it? And I always like reminding people, let's acknowledge that there's a lot of systems and a lot of messages that we’re constantly filtering, right?

I'm scrolling through and, you know that feeling of having, say an unsuccessful cycle, and you jump onto the Mr. Google because you want to do research and find out and we end up scrolling to see and we're looking for some sort of confirmation or some sort of connection, of good or bad or where to go next and what to feel, right? It's so natural to do it. I think it's okay to also just say, I know I need to pause a lot of these places because the messages are conflicting and confusing and not always helpful.

I'm not a huge believer in giving yourself like a 10 minutes kind of thing every day because sometimes people say well give yourself 10 minutes to Google, or do a pregnancy test, or any of these really concrete structures, I just say, you know what? There's no shame in anything that you need to do to just ease stress and anxiety. If testing early is that for you, that's okay. But maybe let's think about it, is it giving you the reassurance you're really needing? There's no shame for wanting that, but I wonder what it will give you and whatever the answer is, what do you think that's gonna feel like? Is it beneficial? There's no sort of negative coping, there's just ones that were helpful before, might not be as helpful now, but we tend to shame people for how they survive in this space. And like you said, we start shaming ourselves. So right off the bat, it's so nice to say there's no such thing as a bad way of coping. And I like to praise people, “Good for you, you jumped into work because you knew what to do. You knew what to do when you were feeling that stress and you dived into something that made you feel worthy and good and productive. You know, what else can we do that makes you feel that way?”

And don't shame yourself if you then spend an hour going down a rabbit hole of Google searches and you know that's okay, you're just trying to gather information. But I think under that information we're also trying to find connection and comfort because we don't want to feel alone here.So I think that's a really nice thing to reflect on, is where else can I maybe bridge that? Can I go outside and just step away for a bit? Can I have a you know, like a date night with my husband or can I go out with friends and just connect with anyone that makes us feel safe and cared for?

I love that. Really the cornerstone of our mission is community; we can't control the outcome, but we can control going through a difficult time with other people who can relate to it and make it a little easier to go through it by having that community around us. And certainly that’s a hallmark of your work with the people that you serve directly, as well as the tone of your messages on social media, which is so wonderful and appreciated.

Any closing thoughts for our audience today?

Thank you so much for supporting my page and following my work that I post. I think it resonates with a lot of people because it's the truth. Whether it's talking about hard things, embarrassing things, things that are hard to talk about, really vulnerable and really intimate, it's okay to just share the truth and I think that's refreshing when we don't have to live in a positive state or a hopeful state. It's okay to just say “I'm having a really sad day, I don't have much hope and you know, I'm just not okay today.” All of that is just accepted and welcomed. And I love when I post something and people respond back with “oh my goodness, I thought I was the only one that felt like that, me too!” 

Let's normalize some of these really hard spaces and we know we're not the only one that's feeling it, there’s something so nice about that. Because we can't take away, we can't fix, and I think we hear that platitude from so many people in a lot of places, “just stay positive, just relax, don't worry, don't stress, it'll happen for sure” and our brain is like, “you don't know that,” and it feels sort of patronizing. So it's nice to just say, “yeah, it makes sense why you're really stressed, cause this is really stressful. Is there something I can do to help?” That's like real support, right, versus “don't worry, it'll be fine.”

You don't have to have a smile. You don't have to be hopeful. You can just show up and really be honest about it. That feels so authentic and refreshing.