In a conversation I had on twitter, a fellow tweeter questioned my use of the term "infertility survivor" in a blog post I wrote. The conversation was good in that it 1) helped me rethink the term and decide on something else (plan to blog on this next week, so stay tuned) and 2) it pushed me to blog 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. Not life-threatening."
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, interestingly enough, I told her that research has found that women experiencing infertility have emotional stress levels similar to cancer patients, as well as HIV patients and chronic pain 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."
Which brings me to the topic of this blog - the inability of those outside of the infertility experience to understand just how much emotional pain and stress is experienced when having a child of your own is next to, or actually, impossible.
This isn't the first time I've had someone tell me they don't believe that research study could be accurate. And 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. (If you've experienced both and disagree, feel free to comment on this blog.) 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.
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"?
Another thought I had was that while infertility does not threaten your life, it does threaten your genetic continuation. In other words, 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.
My point here isn't to prove to anyone that infertility can bring on the emotional pain levels of cancer, HIV, and chronic pain. 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.
I have a theory, however. 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.
What are your thoughts? Please leave a comment, as I'd love to hear from you!
More on stress and coping with infertility:
- The Emotional Impact of Infertility
- How to Keep Stress from Harming Your Fertility
- Reasons to See a Counselor for Infertility
- Checklist: Signs of Depression
- Mind-body Therapies to Help You Cope with Infertility
- Connect With About.com Fertility on Facebook
This post is a part of the About.com Health Channel's blog carnival "Stress and..." hosted by About.com Guide to Stress, Elizabeth Scott.
Photo: B2M Productions / Getty Images
A few posts ago you wrote about how some infertile women feel they have it worse than others–the other woman already has kids, or is younger, or has more eggs, or whatever. I think that speaks to the same concept–no one can really know another’s pain even if the situation seems similar. I recently heard a speaker mention that having gone through a situation doesn’t make one more empathetic to a person who is currently experiencing it. You can be extremely empathetic without identifying, and possibly more so.
I just want to reiterate that I wasn’t trying to minimize the trauma of infertility, which I agree can be worse than serious illness or other kinds of loss.
Your point is well taken about the loss of the next generation, which is death of a sort.
@Hannah, thank you for your comment. Yes, I know you were not trying to minimize anything. Your conversation was simply the catalyst for talking about this common issue. Thank you for that!
As someone who has experienced infertility, at times, the depression I experienced was so bad that I had wished I was dead. I never thought I would recover from the emotional pain that I was suffering.
I think the existential crisis that people with infertility suffer with is just as emotionally, psychologically and spiritually painful as those that suffer with any other kind of life threatening illness. It threatens life as we know it, life as we dreamt it to be. When you are told ‘you will never have a biological child’ a part of you dies inside – an emotional, psychological and spiritual death.
It isn’t a term I used for myself but I think survivor is an appropriate term to use.
I agree that “infertility survivor” doesn’t sound right, but in some ways, people with infertility have more to survive than cancer patients.
I’m a loyal participant in local Relay for Life events and I have lost several family members to cancer. But I’ve also known since I was 16 that I’ll never be able to physically bear children and I haven’t found one simple solution for surviving the problem of infertility.
The price one pays if a person does not survive cancer is their life. It’s valuable, their families will mourn for their loss, plus, no one wants to die. One the other hand, the price one pays if they can’t overcome their infertility is their future genetic offspring. It’s valuable, no one wants to be infertile, but most families I know don’t mourn infertility as a legitimate loss. I’ve never had my feelings of being infertile publicly validated like cancer survivors have.
Saying that one is worse than the other is unfair. Both are entirely different medical conditions that put different things at risk. It would be nice, however, if infertile people received attention that’s comparable to what is given to cancer survivors.
The comments on this post have been so insightful. Thank you for sharing your feelings.
@Josie, you wrote, “It threatens life as we know it, life as we dreamt it to be. When you are told ‘you will never have a biological child’ a part of you dies inside – an emotional, psychological and spiritual death.” Yes, you said it exactly right. This is so true.
@Annie, yes, I feel infertility survivor doesn’t sound right to me as well. When I write my blog post on that title next week, I’ll explain why I choose it originally, why now I feel it doesn’t even fit, and what I’ve decided works better (for me).
You also wrote, “Saying that one is worse than the other is unfair. Both are entirely different medical conditions that put different things at risk. It would be nice, however, if infertile people received attention that’s comparable to what is given to cancer survivors.” Agree 100%.
I do believe that the term survivor may not apply as it’s not a life-threatening condition, and I look forward to your new choice of word to accompany it. However, I do believe that the trauma is comparably difficult, not the same, as I believe no two diagnosis are the same. No two people handle the same diagnosis in exactly the same way. I feel strongly that we as infertility sufferers, should be publicly supported the same way that any group is recognized, and I believe that it is our responsibility as infertile women to get that word out there and ask for the support. I believe that is why so many women blog. Prayerfully, I hope that one day there will not be women hiding their infertility because just like cancer we didn’t cause it, though we do suffer, and often feel ashamed for the diagnosis!
Thank you for the great post and the comments left! @Hannah, thank you for sparking such great conversation!
re using the term survivor, rape victims, sexual abuse victims, child abuse victims have all used the term ’survivor’ -As mentioned above, I think it is a term that can be used for surviving infertility.
In therapy, we use the term survivor all the time in relation to people surviving the most traumatic and horrendous events in their lives. I don’t think ’survivor’ should only be used for fear of physiological death…as mentioned above…people experience all kinds of death or fear of death(ego death, emotional, psychological, spiritual, physiological etc). With infertility, we have to mourn the loss of our child, we mourn the loss of friends moving on to a different life, we mourn the loss of our family line etc.
I think the term “survivor” perfectly fits. if you’ve ever been along side of someone that has going through infertility, and it was not successful, you know that infertility is a traumatic, life changing process.
I used to be an “infertility patient” I’ve now moved on to being a “survivor”. Having gone through a series losses….. ( the loss of embryos, that some people do not understand or try to comprehend that these were MY “CHILDREN” that I lost, (that’s a whole other issue) then the loss of the biological connection, the fact that even adoption//other parenting options may be out of range because of drained finances, etc…
In my opinion, there are so many different aspects of infertility, and the struggles that each couple goes through in the process of trying to conceive, no matter what the cause of the infertility, are huge, and life changing.
While I was going through infertility treatments, my brother in law had cancer twice and is a now survivor, we have lost family and friends to cancer, we have family and friends that are HIV+. and lost children to untimely deaths. Moving forward with life, that is different from the life you had planned, when life changes your direction for you… is not always easy.
I loved this article, and I think great that you are bringing awareness the fact that people just don’t seem to understand the feelings of an infertile woman or man. Its too often dismissed, hush, hushed, and not shown the support that a person needs before, during and after treatment.
Thanks Hannah, for drawing attention to a too often, overlooked, painful experience.
@Denise, you wrote, “Prayerfully, I hope that one day there will not be women hiding their infertility because just like cancer we didn’t cause it, though we do suffer, and often feel ashamed for the diagnosis!” Amen to that!!
@Josie, that is what I was thinking about originally… that the term survivor is used for many different situations, including emotionally but not physically threatening ones.
@Janet, thank you for the comment, and I’m so glad you enjoyed the blog post.
I don’t know what term to use, but I have had cancer and IF, and IF was worse for me.
When I got C after IF, all I could think of was that it would stop me from adopting – that was worse than the thought of dying… sounds crazy, I know, but such is the desire to be a mum…
(happy ending: ’survived’ both IF and cancer and have joyfully adopted)…
I’m a childhood cancer survivor (was diagnosed at 9) and have been dealing with infertility as a result. I can tell you that for me, the infertility has brought back a lot of the feelings of helplessness that I had during cancer treatment as a kid. I can also tell you that I often feel alienated amongst groups of women, who all inevitably have tons of kids. This feels very similar to how I often felt left out at school when I was going through treatment.
For me, the infertility is completely connected and related to everything I’ve been through with cancer and yet another reason why I hate what I’ve had to go through. But none of the side effects or the treatment that I went through can compare to the emotional upheaval I have been through with infertility.
I’ve also found that it is much more difficult and private secret. There are few ways to hide cancer when you are going through it but nobody would know by looking at me the battle I’m currently facing. So infertility has been much more difficult for me in reality, but I think in part because I feel like “Really? Another health issue? Thanks, universe”.
I am a cervical cancer survivor who was diagnosed at the age of 30- just 4 months after getting married. My cancer treatment put me into a medical menopause and left me unable to have children. I did not have children from any prior relationships, nor was I able to have eggs harvested due to the fact that treatments needed to be started immediately. I was diagnosed, treated and went through menopause in 2004. I am now 37 with no hope of ever having a biological child with my husband or even carrying a child using a donor egg. I think of suicide pretty much everyday and let me tell you, it has only gotten worse the older I get. I think about the what ifs every single day of my life and what I would do differently if only I could. I don’t think anyone can ever understand the pain and anguish of not being able to have a child. I can’t tell you the number of times I have been told “well at least you are alive” or ” it’ll get better” or my personal favorite “you can always adopt.”. I have tried pretty much everything to try to make the pain go away or to simply put on a brave face. I’m not sure how much longer I can continue on this way. I’ve tried to fill the void by having “fur babies” and, while it does help to be able to have a living being to nurture, it will never fill the void. Please be considerate and mindful that there are people like u’s out there. I would never ever ask for sympathy from anyone, only empathy and an attempt at understanding. Be nice to those you come across in your day to day life because you never know what they are dealing with and your nasty remark or complete disregard could be the tipping point for them. Hug your kids and never take them for granted.
Thank you so much for this this article. I am 29 years old and my husband and I have been trying to conceive (with a doctor’s help) for nearly three years now. We did one IVF cycle that failed and I am now waiting on the results of our second IVF cycle.
I am a different person than I was three years ago. I cry all the time now — whereas before I was pretty unshakeable. My whole family knows about my infertility, and so do many of my friends, but no one understands the “etiquette” that to me seems like it ought to be common sense. For example: telling an infertile woman about your own pregnancy details or talking about someone else’s pregnancy, or baby, is excruciating. It’s like punching her in the throat. I feel this feeling everyday when someone says something well-meaning yet caustic. I’ve watched all my friends and coworkers — everyone around me — get pregnant (and in many cases more than once!) since my infertility was discovered. I can’t even tell you the pain I feel. I stare at babies and mothers in pure disbelief and I think “Jesus, what and AMAZING ability.. People can just create human beings at will. How do they do that??” I know this isn’t a clean comparison but imagine what it feels like for someone who was born with no arms and legs to sit on the sidelines of a soccer game and think of how wonderful it must be to run and jump. And to know that you’ll never do that. You’ll never even get a taste of that. And still, people take it for granted.
Being childless, I would rather have cancer than be infertile. At least with cancer, there is hope. You are correct, no one understands the amount of pain one endures unless they have been through the agony of childlessness.
Being childless, I can say that I would much rather have cancer than be infertile. At least with cancer there is hope. Not having a child is a lifelong pain that those with children can simply not understand.
After i found a lump in my breast life was so beautiful: The universe, the earth, the animals, the people, inventions, the grass, the trees, even the san antonio spurs (yuck).
Living with infertility makes life so miserable. No one knows that every time they see me how sad I am.
Cancer makes you want to live. Infertility makes you think about suicide too often. How do you think most women found this article through their search engines?
While the word survivor may not sound right, infertility IS life-threatening…the life of the unborn child. How many miscarriages are the result of infertility? Those are all lives lost.
Then there is the devastation every month when the woman sees she is not pregnant even though she had so hoped she would be, she mourns that life that “could” have been there even though it wasn’t.
How many of you can go through the feelings of death of a family member every single month? That’s what an infertile woman goes through, sometimes for many many years.
That is surviving.
What an insensitive person that “mother” is! I wonder if she has been personally affected by the holocaust? I doubt it? Maybe we should ask a holocaust survivor who now has 76 descendants if they would have preferred infertility!
As someone who has hung herself only to have the rope snap I can definately call myself an infertility survivor!
And NO counselling did not help
and NO their wasn’t any “underlying” issues – I made a concious decision not to continuing living an infertile life
Infertility is not only depressing, debilitating, and lonely, but it makes me feel as if I am less of a woman. It is so hard to continually put on a front of being happy for friends who continually post their expectant news or child milestones on Facebook. I find myself removing myself socially because I just can’t pretend to be happy any longer.
With cancer…insurance covers treatment. Not the case for infertility…
I don’t see anything wrong with using the word “survivor” to describe someone who is or has went through infertility. I am an incest sexual abuse survivor and I am not dead but it is accepted that I am a survivor. Only people who have never went through IF can write off what we are going through as not “life threatening”. It is this attitude that I have my children and you should just get over the fact that you can’t.
After getting devastating news that I have low egg count which means low ivf success was devastating. I would have rather heard that I had cancer because then I could fight and have support from friends and family. With infertility you are alone to fight your own battle. Also with IF there is a lot of blame and guilt. Like, one should have tried having kids in their twenties, one put their career in front of having a family, etc. No one blames cancer patients for getting sick.
Infertility is a lonely journey and the only “cure” is to have a child of your own. Everything else is a substitution. Adoption and donor eggs are a beautiful thing if you can afford it but I feel in my heart that there will always be a hole that will never be filled, even with those options. Only people who have gone through this tragic existence can choose the term that best describes their pain.
People who are lucky enough to have children do not understand the absolute desolation and pain that IF brings about. I don’t have a job at the moment so I’m trying to start up a business. I have no control of over my IF, but I will have control over my business (once it’s up and running) the process of starting it is giving me something positive to focus on.
That said, I do think about suicide, to end my pain, bu t I could not do it to my family, I wouldn’t want them to suffer. I don’t understand why bad things happen to good people?
I feel as though I am waiting to die, life unfulfilled. Going through the motions.
Infertility is the worst thing I have had to go through in my life and im still trying to find a reason to want to live. Even being a male I had always dreamed of being a farther but was unable to do so. Now I’m divorced which is mainly because of me and my depression of not being able to farther a child.now im just waiting to hear the news soon that my x wife has become pregnant. Which had actually happened with me and my previous girlfriend before I was married I tried to conceive and no luck there. Than 2 months after we broke up she got pregnant had a miscarriage and than got pregnant and had the child. I feel like not only there is no place for me in this world but I’m getting in the way of women starting there families. Never tried IVF insurance doesn’t cover it. Also I have stopped to even look for a girlfriend because I don’t know what I would tell her if we get to the point of her wanting a family. Its like I’m just going through the motions but I really don’t even want to be alive because of infertility.
Also no more Facebook for me its hard enough seeing all my coworkers starting family’s Facebook just makes it worse.
Any body have anything to say to help me? My family is the only reason I haven’t ended my life and they don’t even know I’m suicidal. Oh last thing is I’m the baby in my family and I’m 28 and all my bros and sis all have families. I don’t know why God did this to me.please help me someone!!!!!!