“You can’t have kids? Here, take mine” and other hurtful things said to those with Infertility.

Posted on August 2, 2016 by admin

Over the weekend I went to visit a dear friend and her beautiful triplets. On the way out of her neighborhood, I stopped at an estate sale. I always find it interesting to see what kinds of items are being sold. Furniture, old family photographs, fashion from across the decades. As I was browsing, another customer was negotiating a sale with the woman running it. He wanted the book case, but would have to pick it up later since there wasn’t room for it in his vehicle with his kids in tow. “Unless you want to watch them?” he teased. “Hey, you can even keep them if you’d like!”

The woman replied, “No, I can’t have my own kids. I’m certainly not going to watch yours.” Internally, I shouted to her, “You go, girl! Good for you for speaking up!”

The man responded by telling her he believed children were a gift from god. It’s all according to his plan who gets them and who doesn’t. Some people have 12 kids, and some don’t get any, he explained.

I’m imagining after reading the lines above, you are having a similar reaction to the one I had, and I imagine the woman who was running the sale had. Cringing and filling with both intense anger and sadness. I was immediately filled with a desire to educate both of them about The Art of Infertility. The woman, for support, and the man so he might think about how the words he speaks could affect the people who hear them. They both received my business card and an elevator speech about the project.

After that experience, I thought it might be a good time to re-run a list of hurtful things and helpful things to say to those with infertility that we’ve compiled from ART of IF participants. We originally ran this content in December of 2015.

Which of these items have you heard the most? Is there anything you would add?

-Elizabeth

Hurtful

1 “’Oh, you are still young, you have time’. Being young and having time has nothing to do with what caused my infertility. Infertility is not a disease that only happens to women over 35, it can happen to any woman at any time.”

2. “When are you going to make your mom a grandma?”

3. “‘You can always adopt.’ This minimized that pain that I was experiencing at the possibility of not being able to have a child that was genetically mine.”

4. “’Once you stop trying you’ll probably conceive naturally’ – by countless people who apparently can’t comprehend that when you don’t have tubes this is impossible. And, yes, I am a strong Christian woman and believe anything is possible for God – but without a delivery system, if I became pregnant it would be with the 2nd coming of Christ and I don’t really know that I could handle the responsibility.”

5. “Infertility is nature’s way of population control. ”

6. “I had a coworker say to me ‘no one else in the office is pregnant… I think you should be next!’ I had to just try to laugh it off and made some sort of reply like ‘yeah, yeah, maybe soon!’ When she made a comment after that about maybe I’m ‘just a dog person,’ that is when I felt like telling her about our struggles, and although I am a ‘dog person,’ I also hope to be a mother someday as well.”

Inconceivable by Aine Quimby. Oil on canvas. Part of the ART of IF collection.

7. “‘Who has the problem with not getting pregnant, is it you or your husband?'”

8. “Variations of, ‘I don’t know what I’ve do without my kids’, ‘My life wasn’t complete until I had kids’, ‘Being a parent is all that matters’, ‘Being a parent is the most important job in the world’, ‘You don’t know love until you have a child of your own'”

9. “We got them all! ‘You’re doing it wrong.’, ‘Maybe you weren’t meant to be parents’, but my personal favorite was from an old man who told my husband ‘Let it soak.’ – Still to this day have no clue exactly what he meant but we laugh about it.”

10. “We are Christians and regular attending members of a Seventh-Day Adventist Church. We had people say to me/us ‘well if it is in God’s plan you will become parents.’ The people who said this were parents. My thoughts were: so God thinks you will be a better parent then me? – I doubt it. So for all the people who abuse their children and have them removed from the home, and traumatized by their parents are apart of God’s plan, but me not being a parent is? – I doubt it!”

11. “‘You can borrow my kid(s) if you want.’ or ‘Do you want some of my kids? You can have them!’”

12. “Sometimes it’s what people don’t say that hurts the most. My friends have had more babies than I can count in the last 4+ years. Every time I go to the baby department and buy them gifts. It rips me up and takes everything I have to hold in the sobbing until I get to the car. I think people take it for granted. Not once has anyone ever said, ‘Wow, that must have been really difficult for you. Thank you for loving us so much that you would subject yourself to that hurt.'”

“Don’t say, ‘My life wasn’t complete until I had kids’, ‘Being a parent is all that matters’, ‘Being a parent is the most important job in the world’, ‘You don’t know love until you have a child of your own'”

13. “‘Everything happens for a reason. It will happen when it is meant to happen.'”

14. “A lot of people always refer to the most common phrase during the infertility journey, which is to ‘just relax and it will happen.’ As much as I wish ‘relaxing’ would cure that, it doesn’t.”

15. “‘I know it will happen. You just have to give it time.’ No one can know that the treatment will work and I felt like it minimized my pain.”

16. “’My friend was going through the same thing, and when she just stopped worrying about it, she got pregnant.’”

17. “The worst thing people have said is implying that my energy created the infertility like through fear, emotional stress, emotional barriers, etc., and to simply get over it because we could adopt or do IVF or surrogacy without knowing the financial and emotional costs of our options. They completely negate the emotional aspect of infertility and how it rocks your world as you know it.”

Grief in Black and White by Sarah Gough. Photography. Part of the ART of IF permanent collection.

18. “I was told I was being dramatic. ”

19. “I cannot remember the comment exactly, but it was something along the lines that I should try to have a baby ‘at any cost.’ As if it wasn’t okay to be concerned about protecting my marriage, our finances, the health of my body, etc. I also recall someone saying, ‘I know you don’t want to talk about it, so I won’t ask you.’ That wasn’t true for me. It’s true for many women, but I did want to talk about it.”

20. “‘Maybe your husband is cheating on you and giving all of his good sperm to someone else.'”

21. “This isn’t a terrible thing to say by any means, but a very common question is: ‘Do you have kids?’ It’s a little uncomfortable. It’s a quick response, no we don’t. But so much comes behind saying those few words. People don’t know – is it because you didn’t want them? Because you tried and couldn’t? What is behind that statement? People don’t usually follow up and ask why not (not that they necessarily should). We’re still trying to figure out the best way to answer that question without the uncomfortable silence that follows.”

22. “‘Flip her over. It’s a whole new ball game.'”

23. “Complaining about how hard your pregnancy is. You get a baby in the end! It does not make me ‘feel better’ about never getting to experience pregnancy. I’ve been through far worse pain and misery, and I never received a miracle in exchange.”

24. “I think that some of the worst things actually came from my mom. With the initial troubles, she’d repetatively tell me that she didn’t understand why I couldn’t get pregnant because my dad just had to look at her funny. Gee, thanks mom for that image.”

25. “‘Drink a ton & enjoy some recreational drugs’ because that’s what worked for them.”

Helpful

1. “When I was going through my miscarriage my husband’s grandmother called me, and told me her story about her loss. We sat on the phone and cried together. She knew no words could help but she just wanted to be there. To share a story she didn’t share a whole lot made me feel supported.”

2. “Understand I’m doing the best I can with a total shit situation.”

3. “Be open to discussion and listening. Most days all I wanted or really needed was someone to listen and really HEAR me. I needed someone to say it was okay to be upset, it was okay to cry, I was grieving a major loss.”

4. “I found that telling people what I needed from them helped. Many times they were clueless as to how to help me. Just knowing I had someone there willing to hear me out whenever I need was amazing.”

5. “Say ‘I’m sorry you’re going through this.’”

6. “Ask me about it and about my losses…. Sometimes I would feel like my babies only mattered to me. It wasn’t until my sister wrote me a letter and told me that she felt their loss too that I truly felt like someone else cared about it. And that meant so much more than she probably ever will realize.”

7. “The best way my family and friends have supported me is to educate themselves so that they can at least understand the medical aspect of what is happening to me.”

8. “Be there when I need to talk or cry and on the opposite end of that, allow me the time I need to myself, to understand that I may not always be up to hanging out with them while they were pregnant… or with them and their children.”

9. “Our parents would stop asking us questions about doctor appointments and wait until we told them info. They didn’t want to bombard us with questions and they were respectful of our choices.”

10. “Just doing things to keep my mind off of what I was going through. Inviting me out to do things I enjoy, like getting spa treatments, going to sing karaoke, going to wine tastings, etc. Many people asked if they could pray for me and I really liked that.”

11. “My family: mom, sister and aunt all gave me the progesterone shots through both of my IVF cycles.”

Failed IVF #1 (September 10, 2015 – October 9, 2015) by Sara Nelson. Mixed media. Part of the ART of IF permanent collection.

12. “One of the most memorable ways people helped support us was fundraising for IVF. We set up one of those health donation websites and had a garage sale. Family members and friends had bake sales, everyone donated items for the garage sale, and even coworkers from family members helped out. It was really really humbling and brought us to tears once to see all the support we were getting.”

13. “The people who have shared their experiences of infertility with me have been extremely supportive.”

14. “Honoring my request that if I wanted to talk about it I would and not ask questions otherwise. When I needed someone to talk to and they really listened vs. trying to make me feel better or talking about their own fertility struggle.”

15. “Financial help was hugely important to me. I wouldn’t have opportunity to seek alternative therapy, like acupuncture, without help from my parents. To me, there are already so many costs of fertility treatments, and I was unwilling to try acupuncture because it was just another cost.”

16. “The best ways that our friends and family have supported us is just by listening and encouraging us. They are positive, but they are realistic in having the same expectations as us, which is hey, it might happen, it might not happen, but you have to give it a try.”

17. “They never tell us we should or could have done things differently, and instead point out to us that we are just one step closer to having a baby. You guys found out what doesn’t work; now you get to move onto the next thing.”

18. “Letting me cry. Taking me out to dinner. Letting me avoid baby showers and kids’ birthday parties with understanding and not exasperation or frustration. Giving me space to vent and grieve.”

19. “I have discovered some very special friends through this process. They have best supported me by being present and listening, not judging or offering suggestions/opinions. They ask me what me what I need and strictly follow any guidelines that I set out. For example: I hate it when people offer solutions so I’ve asked my friends to never offer solutions. The ones who listen warm my heart.”

Participants at the ART of IF Women Write the Body Workshop in East Lansing, MI.

20. “Help me to feel I’m still me even though I might feel a piece of me is broken.”

21. “When I would talk about the idea that there are many ways to be fertile, that bearing offspring is one way, but not the only way, and that fertility encompasses so much more – there were people who ‘got’ what I meant and people who didn’t. Those who ‘got it’ were excited for me and excited to see what other endeavors I might pursue in life. That made me feel supported.”

22. “Many friends have tried to support me just by asking what we need. Usually I tell them I just want to be allowed to hurt. The best friends I have are willing to let me hurt, are willing to sit through awkward silences and haven’t been hurt or offended when I’ve politely declined to attend their baby showers or their children’s birthdays (there are some, believe it or not, who take it personally and have made me feel bad about it).”

“Letting me cry. Taking me out to dinner. Letting me avoid baby showers and kids’ birthday parties with understanding and not exasperation or frustration. Giving me space to vent and grieve.”

23. “Please spare me any conversations about pregnancy, childbirth and breastfeeding. These situations make me incredibly uncomfortable and I’ll just find a chance to try and run away. It’s painful to hear these conversations, they tear at your heart. And if I know that you are aware of my situation & you bring up these topics in front of me, I feel even more hurt & isolated.”

24. “Do not complain to me how exhausting and hard it is raising your children. Nothing in life is easy that’s worth something. Think about how that sounds to someone who has been to hell & back trying to have children.”

25. “Really, I just wish people could think twice before they speak. Try for a minute to put yourself in our shoes. Be compassionate. If you have a friend or family member that can’t have children, don’t ignore them. Do tell them you are thinking of them. Do tell them you understand they’re going through a hard time. Do tell them you’re praying for them if that’s what you do. Just try to understand and be more sensitive.”

#startasking How can we better support those living childfree after infertility?

Posted on April 29, 2016 by admin

When traveling for the ART of Infertility, we are often asked how we manage to have full time jobs plus develop this project. We have spent a lot of time thinking and talking about this. Both of us have found healing through our involvement with this project, which has served as motivation for our commitment to the ART of Infertility. Yet, for both of us, we have also had to acknowledge that our commitment to this project has also impacted our family-building plans. Whether consciously or not (at this point it’s hard to determine), the ART of Infertility has become our metaphorical child in which we have dedicated our own resources, time and emotional energy into sharing the stories, art and voices of so many who have been able to complete their family. Yet, as we continue to work on this project, we continue to feel more or less poled to our own childfree resolution. Honestly, though, we both have felt some hesitation with disclosing to others that we are childfree. Truth is, it changes on a daily basis. Below we share with you some of our personal reflections on coming to think of ourselves as infertile and childfree. We also include perspectives from some of our peers who have been supportive throughout this process — allowing us to talk openly and honestly about the day-to-day struggles of figuring out if childfree is right for us.

-Elizabeth and Maria

Elizabeth’s Reflection

My husband and I discontinued treatment a little over two years ago. After five years, five surgeries, ten treatment cycles, and one miscarriage, we were emotionally and physically exhausted. We needed time to grieve the biological child we would never have and regroup. After spending so many years focusing on infertility, we needed to relearn how to focus on ourselves and each other. We’re still relearning.

In the meantime, we decided we’d prevent pregnancy and give living childfree a go. It’s the resolution and infertility subset that I currently most identify, but, since we haven’t made a definite decision yet, I often feel like an imposter. I want to be 100% respectful of those who have truly reached that stage in their journey and are learning to navigate and living their lives childfree.

We’ve started looking into possibly pursuing using donor embryo and I’m conflicted. The part of me that still longs to parent one day says to give it a try. The part of me that has come so far in healing over the past two years is reluctant to open myself up to the roll of a dice it would be. What if it doesn’t work? What if I get pregnant and miscarry again? What if I become a parent and can’t devote the time to ART of IF that I want to be able to? What if?

I’ve spent a lot of my infertility journey coming to learn and accept that I can’t let society pressure me into thinking I haven’t done enough, that I haven’t tried enough, that I didn’t want parenthood enough. Instead, I need to make the best decision for my family of two. I’m comfortable now knowing that, in the end, I will do what’s best for us. That if I don’t choose to further pursue parenting, it isn’t about giving up, but choosing another path.

Those living without children after infertility have far too few resources for support and, perhaps, face some of the biggest stigma. I’m constantly trying to find an answer to how we can improve life for this group of those with infertility. So, I’m hoping you will all #startasking what you can do to help those living child free after infertility. Let’s get the discussion started with some insight from just a few who have reached this resolution.

Maria’s Reflection

“Am I infertile enough?”

This question lingers in my mind quite often. Five years ago, my husband and I began to come to terms that we were going to have difficulty conceiving. At the age of 24 and the oldest of two large Catholic families, coming to understand that we weren’t going to magically get knocked up was disorienting and isolating. For years, I had been told by numerous people that we should be very careful because we come from two very fertile families. I think back on these statements now and can only laugh at irony of it all.

In fact, I often think that all of these cautionary tales – to protect our fertility – actually has prevented our fertility. Now, I am not really superstitious, but sometimes that’s really what I think happened. You see, when Kevin and I were told that our next options were for me to undergo an HSG, our steps towards building a family were put on hold.

For years prior to my infertility, I have had difficulty undergoing OBGYN exams and treatments. And so the proposal that I do an HSG — with no anesthesia — seemed (and still does) impossible. Kevin knew that an HSG would be extremely challenging for me and so we put IUI and IVF off the table. We focused on our marriage, we started a RESOLVE support group for couples, and we both went to graduate school. For the past four years, we have really put off next steps in our family-building journey. And often, when asked where we reside in the infertility family scale, we say “we are leaning towards childfree.”

Yet, this past year, Kevin and I have privately been revisiting our inclination towards childfree. This past June, he got a new job with stellar infertility coverage. On top of that, in September 2016 both of us will be turning 30. And finally, this year will be the last year that I am in graduate school before I transition to a job. This forced us to rethink our options. And it forced to talk about guilt.

Both of us have attended Advocacy Day and have heard the stories of so many couples that would do anything to have the health insurance that we have. We struggled with this deeply. How do you say no to something so many would say yes to in an instant? But as we talked, we shared how far we have come to accepting ourselves as being infertile and childfree. This I do not think was intentionally done but simply kind of happened through a variety of choices we made in our journey. And so while we have agreed to not pursue any treatment or even adoption at this point, we also feel a bit hesitant to claim “childfree” as our resolution.

Truth is, saying that you are childfree and not quite 30 is a hard thing to swallow. I feel like I was never “an infertility warrior.” I feel like I wasn’t able to give it my all. I do — at times — feel like an imposter. But I hope that during #NIAW we will #startasking about how we can work towards more acceptable notions that being childfree (and even the need to do ALL of the treatments) isn’t a last resort — but a valid choice.

Thoughts on Inclusion

“Refer to us as a family. We ARE a family.” Brooke Kingston

“I would say invite us to things (like birthday parties, showers, etc), even if you think/know I won’t come. It can be so hard – sometimes we want to be included, and sometimes it’s too painful. My big fear is being left out. I want it to be my choice if I don’t participate, not to be excluded and forgotten.” Brooke Kingston

Discussions on Choice

“I would like to see you include think some discussion about choice. It is not a usual choice you wake up to – often you reach the limits of your treatment options or finances – so the decision or stopping point is chosen for you. I think choice makes it sound like we have more agency than we feel we do. I feel that when people say I made the choice to stop treatment, they minimize the extent of my grief.” Anonymous

“On the flip side, it’s been very important to me to phrase this as our choice. Our situation is different though and I acknowledge that. But we feel that we took power back when made our choice. “So we – even as a community – see this very differently, but it’s important that people know that we do not come to this resolution lightly or easily.” Brooke Kingston

“What is choice and what is making the best of a shitty situation? Ultimately we all want to feel whole and ok with our lot in life.” Anonymous

Ways to Help and Comments that Hurt

“People can help by understanding that I’m going to be grieving my whole life, as friends experience milestones with their children.” Brooke Kingston

“One of the most hurtful and misunderstood things I have heard about being childless after infertility, is that we didn’t want to be parents bad enough. That couldn’t be further from the truth. We endured more treatments than most precisely because we were so committed to conceiving our children.” Anonymous

“It is heartbreaking to have to let go your potential children. It is a pain that goes far beyond integrating an infertility diagnosis.” Anonymous

“And for me, you know my biggest trigger is the whole “never give up” type sentiments that are in tons of IF posts so those of us that chose to move on (or the choice was made for us) – those statements add to the feeling of failure. Like, if I *really* wanted a child I should have gone further in debt, risk more heartache and physical pain than I already had and what? Just kept going until bankruptcy or menopause, which ever came first just so I could say I never gave up?” Kati K.

“I also hate when people continue to tell us not to give up now that we have chosen. What I needed to move on and live my life included closing that door (with birth control). I was NOT in a good place when that door was still open and I was on the roller coaster. Don’t tell me that you’ll keep hoping for me. Hope for what I want: a loving, full, and fun life with my husband, amazing relationships with our nieces and nephews, and continued peace with our decision. The best way to support us is to hope for what we’re hoping for and help us achieve it.” Brooke Kingston

If you’re living childfree after infertility, what would you want people to know? What would help you feel supported? We look forward to hearing your thoughts.

Twenty-something and Dealing with Infertility

Posted on February 15, 2016 by admin

It’s a common misconception that infertility is only a problem for those who wait too long to try to conceive. Today, we’re sharing portions of just a few of the many stories we’ve collected from those diagnosed with the disease in their 20s. This post does contain an image of babies/parenting.

– Elizabeth

Natalie and Stephan

Natalie and Stephan focus their energy on putting puzzles together as a way to keep infertility off their minds.

What are some of the best ways people supported you during your journey? One of the most memorable ways people helped support us was fundraising for IVF. We set up one of those health donation websites and had a garage sale. Family members and friends had bake sales, everyone donated items for the garage sale, and even coworkers from family members helped out. It was really really humbling and brought us to tears once to see all the support we were getting.

What is the biggest lesson you learned throughout the journey?

Natalie: “The big ticket question. I think this is what I struggle most with. Figuring out why this is happening, or what I can learn from all of this. Patience definitely, though, I can’t say that is currently my strong suit these days. Over all, I think trying to ‘live in the moment,’ is a big take away. It’s so easy to get swept into ‘what’s next?’ or ‘what should I have done?’ that I lose the now. I also think I’m gaining perseverance.

Stephan: “I think learning to be more pragmatic is the biggest takeaway from this journey. I was so expectant with the initial IVF cycle because so much time and money was invested in it that I think we were both extremely disappointed when it wasn’t successful. Learning to live within the facts and to not speculate has helped save me the disappointment.”

“I felt alone and ashamed to have to go through this at what was then 24.”

Audrey and Chas

Audrey: “One of our biggest challenges was Chas’s anger for not being able to expand our family naturally. During an argument he told me that the reason he was really upset was because we have 2 empty rooms upstairs (we bought a 4 bedroom house in the hopes that they would be filled shortly after we purchased.) I felt alone and ashamed to have to go through this at what was then 24.”

Chas: “This infertility journey is mostly my fault. Not exactly my fault but I’m the one with something wrong. It’s kind of been hard to take. I’ve had my good moments and my bad moments. I’ve had moments where I’ve just blown up and said I can’t do this anymore. Big, huge blow outs. It’s hard when you feel like it’s your fault. I dealt with it on individual terms instead of more of a team effort. When I finally embraced that team effort, everything got a lot better. Although, I still have my days. You just have to go in as a team.”

“The advice I would give to someone who has just been diagnosed with infertility would be, realize it isn’t anyone’s fault. Also, don’t hold it in. Talk to your true friends and let them know that this isn’t something that can just be ‘relaxed’ away, or something you can ‘try harder’ at, this is a real medical problem.”

Megan and Jeremy

Megan: “Through my testing, we found I had a heart shaped uterus, hypothyroidism, PCOS tendencies(but no official change in the labs to get the official PCOS diagnosis), MTHFR, elevated NK cells and cytokines, and blood clotting tendencies/antiphospholipid antibody syndrome that impaired bloodflow to my ovaries and uterus.”

“My RE told me that if my labwork didn’t improve in my next cycle (my FSH just came back extremely elevated while we were planning our 3rd IVF cycle for 2 months later), he wouldn’t let me use my own eggs anymore. At 28 years old, I took that news really hard.”

“Prior to the IF process, I was completely phobic of needles and there was no way I’d give myself shots. With the exception of the PIO shots, I gave myself my shots and had IV infusions every 2-4 weeks to prevent my immune system from attacking the babies. I’d sometimes have to be stuck up to 6 times a day depending on lab work and how easily they’d get the IV. My desire to have a baby far surpassed my fears. What other choice did I have? It all seemed small in comparison to not having children.”

Hurtful and Helpful Things to Say to those Dealing with Infertility

Posted on December 9, 2015 by admin

We often hear from those dealing with Infertility that they have had friends, family, and acquaintances say many hurtful things to them about their disease and inability to conceive. We also hear from people close to those with an infertility diagnosis that they want to helpful, they just don’t know what to do or say. So, we’ve compiled a list of the most common hurtful and helpful comments we’ve heard through our interviews, along with some of our favorite ways we’ve heard of people helping and some of the strangest unsolicited words of advice. There are 25 quotes from our interviewees in each category but they aren’t in any particular order, just numbered for easy reference, and as Maria noted, one for each of the 25 days of Christmas! We hope that you find this a helpful tool, especially with all of the social gatherings that occur this holiday season.

Elizabeth