The term “infertility survivor” came up during a Twitter exchange. The conversation was good for these two reasons:
It helped me rethink the term infertility survivor and decide on something else.
It pushed me to write on how outsiders see the emotional distress of infertility.
Tweeter @mominisrael, aka Hannah Katsman of A Mother in Israel, felt my use of the term survivor was “unhelpful.” When I asked her for other suggestions, as I was open to new ideas, she wrote, “don’t know, but while infertility is traumatic, it shouldn’t be compared to cancer, Holocaust, etc.” It’s “not life-threatening,” she said.
What Women with Cancer and Infertility Have in Common
I was taken aback by her response and assured her that I didn’t intend to put infertility into the same category as the Holocaust or cancer survivors.
@mominisrael replied, “When I hear the term, I think of life-threatening events. I know you weren’t comparing it.”
However, research has found that women experiencing infertility have emotional stress levels similar to cancer patients and cardiac rehabilitation patients.
Regarding the research study, @mominisrael replied, “They couldn’t study the dead ones. 🙂 I’m not disputing the trauma, but still think it’s a bad term.”
Why Do Outsiders to Infertility Have So Much Trouble Understanding Us
This highlights the inability of those outside of the infertility experience to understand just how much emotional pain and stress is experienced when going through infertility. When having your own child is a struggle or actually impossible.
This isn’t the first time I’ve had someone tell me they don’t believe this research study could be accurate. I wonder if it goes back to the “Who Has It Worse, Who Has It Better” game, where we think we can judge another’s distress or emotional pain.
I’m pretty sure that if you asked someone, “Which would you rather experience, infertility or cancer?” the majority of people would say infertility. Mainly because people want to live, even if their lives are difficult.
But this doesn’t change the levels of emotional stress they may experience. A disease being life-threatening doesn’t always lead to deeper depression or higher levels of stress. In fact, I know a few people who became life-lovers after cancer. Staring death in the face made them appreciate this world more.
When Your Genetic Life-Line Ends With You
At the same time, I know those suffering from infertility who had such deep levels of distress and depression that they considered suicide. And, sadly, some people do commit suicide from untreated infertility-related depression. So who could possibly judge “who has it worse”?
While infertility does not threaten your life, it does threaten your genetic continuation. If you never have biological children, your gene pool stops with you. It’s a sort of death of the future generations.
I can’t say how conscious we are of this aspect of infertility, but it’s there. We are, whether we like to admit it or not, biological beings. Biological beings are programmed to create new life.
When Your Friends Are Less Stressed, They Assume You Should Be Too
My point here isn’t to prove to anyone that infertility can bring on the emotional pain levels of cancer. Research has already done so. I just am wondering out loud why so many people who have not experienced infertility have trouble considering that this may be true.
If we compare the stress levels of friends and family, those who love someone with cancer or infertility, I suspect it’s much harder for the cancer patient’s support circle. No one wants to see their friend die or visibly suffer during treatment.
On the other hand, as many fertility-challenged people know, friends and family rarely feel distressed over infertility in a loved one. The emotional (and physical) pain tends to be less visible and therefore, much harder for others to feel empathy towards.
Comments from Readers
Here are some comments readers have shared with me on this sensitive topic.
Eris D. writes:
“I am a rape survivor. In that context, the word “survivor” is used instead of “victim,” to indicate that I lived, I healed, I have not let the rape define, control or destroy me. I have my life back, so please do not call me a rape victim anymore.
“Unfortunately, I am also one of infertility’s victims. Six years, two failed IVF, 5 miscarriages have wrecked my body and my mind. (Also my friendships, family connections, bank account and nearly my marriage.) I cannot yet say I have survived infertility. Some days it feels like I won’t–my heart hurts so bad I wonder how it can keep beating. I go to bed at night and secretly hope I won’t wake up. I am in treatment but it is very, very hard to find hope. This is not a disease one can conquer with strength or determination; it is not an attacker you can fight off or run away from or call 911.
“I think the term “infertility survivor” is absolutely apt, and I hope to someday consider myself one.”
“As with any term of identity, no one gets to choose for anyone else how they identify. Don’t like the term “survivor” for infertility issues? Great–don’t use it. But you don’t get to tell anyone else what they can or can’t use to define and describe their experience. To survive means to come through, to still be standing at the end, to make it. The agonizing battle which is fertility is certainly “survived.””
“I am a cancer survivor who also suffers from PCOS and am infertile. I think you referring to yourself as a survivor is an apt description. I have survived my cancer. But I still must survive every day my infertility which is a much more difficult thing to have to face.
“With my cancer they could cut it out, I could take pills and undergo other treatments for it and the same goes for my PCOS.
“But there is nothing that can be done for my infertility and that destroys me more than anything I have had to face.
“With my cancer there were many wonderful avenues of support and understanding that I could to turn to. Where as with my inability to have children, every one just blithely comments that we can always adopt.
“They don’t understand that that is not what we want to hear and it doesn’t make things magically better.
“So you are a survivor.
“You survive living with that sadness and emptiness everyday. You swallow it down and paste on that smile when you have to go to your friends baby showers and when they plaster those pictures of their children all over their Facebook. Don’t let anyone make you feel like your issues are less than someone else’s.”
“After reading this, you are correct in saying that people aren’t as empathetic or sympathetic regarding infertility.
“My husband went through leukemia when he was 18 – just after we got together. I was with him every day, and people were always asking how he was, if everything was okay, and all distressed. After awhile though, they stopped being as concerned, they still asked questions, but the answer was the same as before – he is getting through it. The days are tough, and the nights also.
“And then recently, he got told he was infertile, due to the radiotherapy. It was a massive shock, as one of his life goals is to have his own children. When I told some of my friends, I had a very mixed emotion range. Between my two closest friends even. One said that they were heartbroken because they were thinking positively about the whole situation, and the other said to just keep thinking positively.
“I am not the one directly going through being infertile, that is my husband. BUT – none the less, it effects me too.
“When he was going through his cancer, he barely thought about it. The first few weeks were the worst, that’s when he was so upset about it, BECAUSE he was thinking about it. After those few weeks, it just became a routine for him. However, talking about infertility, he has basically ignored it because it’s too painful for him to think about.”
“This is an interesting take on infertility. I am both a cancer survivor and an infertility survivor and from my personal point of view, cancer that is treatable (though with terrible side effects) is a little easier to handle than infertility.
“My infertility was a direct effect of chemotherapy (I was 25 when I underwent chemo and I did not have children then). Living without hair and eyelashes was less daunting than what I am currently going through – the possibility of never having my own child.
“Somehow infertility hits a woman very hard… where it hurts. Also indirectly people start blaming you for being infertile as if you did something wrong to become infertile. Whereas, with cancer people mostly accept that cancer just happens (unless it’s a proven case due to smoking or genetics, etc).
“Infertility is a huge issue for a woman. But end of the day, you are entitled to a happy life whether or not you bear children.
“Years of conditioning that women need to bear children is the root cause of this misery. Some people have ailing hearts, some have bad liver, some have tumours in the brain… so is infertility…It’s an organ or some hormone malfunctioning or being weak. It has nothing to do with how good we are or how bad we are.
“No matter how hard you try sometimes there’s only so much you can do about a thing like infertility. The better we accept that and we accept that one of our organs is just not in great condition, we can move on.
“If we love children immensely, we can try other means. We shouldn’t care about what others feel. Growing up a child is a massive project – an enlightening one. To a great extent, it’s going to ease the pain of being infertile.
“All of this struggle only makes you stronger and more empathetic. Each of us need to find ways to tackle the depression and lead a happy life.
“I guess with time, things will improve for women. The alarming rate of increase of infertility will necessitate action and thought.”
Are you feeling depressed? Please reach out for help!
Cultivating Support When Facing Infertility
Coping with Suicidal Thoughts
More on coping with friends and family when trying to get pregnant:
12 Things Not to Say to Someone With Infertility
10 Things to Stop Doing if You Want to Support Someone with Infertility
How Can I Support a Friend with Infertility?
Should You Tell Your Friends and Family About Your Infertility?
10 Ways to Cope When Trying to Conceive Overwhelms You
Schwerdtfeger KL, Shreffler KM. Trauma of pregnancy loss and infertility among mothers and involuntarily childless women in the United States