What Not To Say To Those Dealing With Infertility

After going public with our story, it did not take long for me to compile a list of things not to say to those struggling with infertility. The majority of messages I received were incredibly kind and heartfelt, but some were seriously insensitive and many were filled with advice not even relevant to our diagnosis. Obviously everyone is different and what triggers one person might help another, but from what I’ve heard and based on my own experience, the below statements are generally unwelcome, yet also some of the most common responses. 

I recognize that it’s not always easy to find the right words, and I don’t blame those who get it wrong (at least at first), but I do attribute a lot of the insensitive remarks to a lack of awareness, which is why I started posting my story online. Research shows that women dealing with infertility “have emotional stress levels similar to cancer patients.” That is not to compare the two, but when someone is diagnosed with cancer, that person is usually met with empathy and understanding. With infertility, that person is often bombarded with ignorance and unsolicited advice. I’m here to help change that.

Before I jump in, I want to remind you that 1 in 8 couples deal with infertility and 1 in 4 pregnancies end in miscarriage. Infertility is an actual medical diagnosis that affects men and women equally, contrary to popular belief. If it’s not you who is affected, it’s your friend, family member, colleague, old roommate… maybe all of the above, but most people don’t want to talk about it, me included. But I do it anyway, for the thousands of people reading these posts and thanking me for helping them feel less alone.

What Not To Say To Those Dealing With Infertility:

“Don’t worry. You’re still young. You have time.”
While you might think this one is comforting, you should know the facts… younger patients have higher success rates and a woman’s fertility declines significantly after the age of 35. Plus, it can take months to find a clinic, go through testing, and start treatment. It’s also important to note that age does not always determine AMH (egg supply). That 23 year old you’re talking to may just have the egg supply of a 40 year old. 

“Just relax. It will happen.”
I relaxed for almost two years before seeing a doctor. Unfortunately; relaxation is not a cure for infertility, especially in our case when we’re dealing with male factor. And for some people, even with treatment, it doesn’t “just happen.”

“Whose fault is it?”
First of all, playing the infertility blame game has literally led couples to divorce. Second of all, it’s really none of your business if someone does not volunteer that information. I’ve also heard from many women who agree to take the blame since their husbands are too ashamed or carry too much guilt, so clearly it’s a much more loaded question than people realize. 

“I know someone who dealt with infertility for years and then tried x and got pregnant a month later.”
That’s very nice. Would you tell a cancer patient going through chemotherapy about your friend whose tumor miraculously disappeared after taking some herbal remedies? I wouldn’t. Unless they request to hear those kinds of stories, it’s just mean because while they are actively suffering for the chance at getting better, you’re basically telling them about all the people who didn’t have to. Every diagnosis is different, every case is different, and while miracles happen, the person you’re talking to most likely has an entire team of doctors helping them and I bet you they have researched more about their diagnosis than you ever will. 

“You should try...” or “Have you tried…?”
These are similar to the above comment, but all are equally awful. A couple (under 35) cannot even make an appointment with a fertility clinic until after they’ve tried for at least a year. Many wait much longer and I guarantee you they’ve spent hours upon hours researching and trying all the natural methods during that time. Unless someone asks for your advice, please don’t offer it. 

Probably the worst piece of advice I received was from someone telling me to drink cough syrup three times a day and I’ll be pregnant by the following month. I’m begging you, just stop.

“I also struggled. It took me almost 5 months.”
I have no doubt that was difficult for you. When you’re ready to start a family, every month that passes is incredibly hard, but if you haven’t dealt with infertility, you’ll never truly understand what it’s like and you should know we would give anything to trade places. A great quote: “There is a unique pain that comes from preparing a place in your heart for a child that never comes.”

“You can have my kids. Haha.”
No need to explain this one. It’s simply insensitive to say this to a couple that can’t have any.

“You could always do IVF.”
Going through IVF myself was the main reason I felt the need to start raising awareness because people have NO clue what it entails. The process is extremely invasive, traumatic, painful, and insanely expensive. We’ve spent nearly $40,000 at this point since insurance companies still act like IVF is experimental medicine even though over 8 million babies (as of 2019) have already been born that way. People also don’t recognize that IVF is not a guarantee and many women have to go through the process multiple times before they get their miracle. I don’t think I could ever physically or emotionally put myself through another round, let alone afford it, so no, IVF is not always an option. 

“Congratulations! I’m so excited for you.” (in regards to starting IVF)
This is a real comment that I and many women I know have received. Just going to reiterate how traumatic IVF is and that it doesn’t always work. 

“IVF is selfish and you should adopt since there are so many children who need families.”
I can think of a lot of selfish things, but spending our own money for the chance at having biological kids that we want and already love is not one of them. 

Just as you would never tell someone who had biological children that she should have adopted instead, it is unkind to tell someone going through treatment that her decision is not valid as well. Infertile does not equal sterile. It just means you need a doctor’s help.

Adoption is a beautiful thing and it’s actually something I’ve always considered, but I believe it should be a choice, regardless of your situation, and definitely not the responsibility of the infertile community. Besides the fact that it could take years, costs about $40,000, and comes with its own set of challenges and heartache.

“Don’t worry. Everything always works out in the end.”
Life goes on. People move forward. But no, it doesn’t always work out and you telling someone it will demeans how they are feeling. Because IVF has such great success rates, people think it guarantees a baby, but that’s so not true. Plus, even if IVF works the first time, it doesn’t cure infertility and the thought of doing this again for baby #2 is daunting.

“Everything happens for a reason.”
This one definitely doesn’t apply to everyone, but in my case, if that is your belief, please keep it to yourself. Gd has been a huge part of our journey, but I believe bad things are just a part of life. I refuse to believe a woman has a stillbirth or a man is born with no sperm or that a couple can’t have children naturally because Gd “wants it” that way. 

“You need to say Nishmat for 40 days. I know someone who started saying it and got pregnant after 5 years of trying!”
If one more person tells me to say Nishmat (Jewish prayer), I’m gonna lose it. One, I’ve been saying Nishmat for practically a year straight. Two, if Nishmat were really the cure all that so many people make it out to be, no one would be dealing with infertility at all. 

I absolutely believe anyone who tells me about their “Nishmat miracle.” Hi, I’m saying it for a reason. But when people act like this one prayer will solve all our problems, it completely dismisses the hell we’ve been going through for the past 2.5 years.

I’m sure a lot of older singles can relate since I know so many are advised to “just say Nishmat” to find their match, yet the years pass and nothing…

On a similar note, I think it’s best to avoid all topics of spirituality in relation to infertility, unless the person struggling brings it up. You just have no clue what’s going on behind closed doors… maybe that person lost her faith altogether and is no longer religious, maybe she is taking advice directly from her rabbi, maybe she was sobbing on the floor last night making deals with Gd. Faith and struggle is not a simple relationship, no matter what you’re going through. 

“Reach out to Bonei Olam. They’ll pay all your bills.”
I almost feel like screaming this from a rooftop… “NO, THEY WON’T!” There are so many incredible organizations out there, Bonei Olam included, dedicated to helping couples deal with infertility both emotionally and financially, but no one is just handing out money. You need to apply and QUALIFY for financial assistance. The application process is long and intrusive and because so many couples deal with infertility, funds are limited and; therefore, given to those who really have no means of paying for treatment. For those of us who spent our entire lives saving, it’s goodbye house fund for us. Yes, the organizations are sympathetic and recognize that just because “you have the money,” it doesn’t mean you can actually afford treatment, but those with savings are not prioritized.  

“Any updates?” or “What stage are you at in the treatment process?”
Some couples like sharing what’s going on in the moment, but most people I know, even if they’re open about the fact they are struggling, want to keep the process private. I have no interest in anyone knowing what stage we’re at on our journey to pregnancy, so whatever I post is way after the fact. There is nothing conventional about assisted reproductive technology, but what couple doesn’t want to experience a sense of normalcy and privacy during this time? 

Infertility is also a full time job with weekly (sometimes daily) appointments. We are exhausted, we are drained, and we are often hit with roadblocks and failed treatments every time we start making progress. We are just trying to get through each day and process results as they come, so the last thing most of us want is to update anyone on how it’s going, except maybe our support groups since no explanations are needed. We literally have our own language of acronyms (2WW, AF, ART, BCP, BD, BFN, BFP, DE, DH, DOR, DPO, FET, MF, PGD/PGS, PIO, POAS, PUPO, SA, TTC… just to name a few.) Yes, I’ve used all of those terms and more over the past year and I’m overwhelmed just thinking about discussing them with anyone outside the infertility community.

Ideas of What To Say:
“Praying this works for you.”
“I really hope this works for you.”
“Just checking in. I can only imagine how hard this is for you. No need to talk about it if you don’t want.”
“I’m so sorry you’re going through this.”
“I’m here if you ever want to talk.”
“I don’t know the right words to say, but I’m here for you.”
“Thinking of you.”
“Here if you need anything.”
“It’s so unfair what you’re going through, but you’re a real warrior.”
“I have a friend who also dealt with {insert actual diagnosis}. Happy to connect you if you want.” 
“I went through a similar experience and ended up adopting. Here if you ever want to learn more about the process.” (if you feel the need to bring up adoption)

And last tip, do some research. Get informed about infertility. There are so so so many articles and blog posts discussing every last detail of the emotional, physical, and financial tolls that infertility has on a person, including posts like this one that basically mirror everything I wrote. Trust me, it’s always appreciated. 

xx Esther