It’s been almost 10 years and the phrase weaves in and out of my mind on a daily basis: “You don’t seem to be ovulating, honey.” She looked me in the eyes, and all of my 16-year-old pain, confusion and frustration got caught in that line of vision for all to see. My mother sat behind me and said nothing. I knew then and there that it was going to be a long road. In attempts to stimulate the ovulation, I began fertility drugs. They were costly and they were painful. I was sick in school and no longer my usual chatterbox self. When people began to notice, they asked what is wrong. When I told them, or tell them, both then and now, here are some of the things I hear:
1. “You’re not even married. Let’s take life one day at a time…”
You’re right. I am not married. I am also only 24. About half of the women my age are not married. Most women my age are daydreaming about their perfect wedding and their perfect future children. Me? I dread denying the love of my life that opportunity. I worry about taking that away from him basically every day of my life. The older I get the more I live in that worry.
2. “My brother’s girlfriend’s sister had that and…”
This one is the most common. I know infertility is a challenging thing to relate to and people do their best, but sometimes the success stories of people you don’t even know make me feel farther away from you than before.
3. “But you’re so young, you don’t know that you won’t have a baby.”
Obviously, I am young. I was diagnosed with this condition at 16. I have spent ten years worrying about the possibility of conceiving a child and am nowhere near closer to that prospect in the future. Just because I am young doesn’t mean I don’t worry.
4. “With modern medicine being the way it is, it won’t be a problem.”
Modern medicine is beautiful; don’t get me wrong. Modern medicine has helped so many people have babies, it has helped so many people beat cancer, it has healed so many injuries, and it has saved so many lives. But when you mention modern medicine to a young woman diagnosed with infertility, it brings about a whole new slew of worries: Will it come to this? If so, how on Earth will I afford it? Will the drugs hurt? How will I survive working and being overloaded with hormones? Trust me, those questions put us on mind overload.
5. “You know, if you just stay active and healthy…”
You’re talking to the girl who has run five half marathons. I obviously know that nutrition helps heal infertility. I do not need anyone pointing this out to me.
6. “At least you don’t feel any pain, it’s not like you have cancer.”
Yes, people have actually said this. Of course I am glad I do not have cancer. I know that people with cancer suffer significantly more pain and bear an even heavier cross than I do. That being said, PCOS and other infertility conditions have been linked to future cases of cancer. Let’s not give me something else to worry about, please and thank you.
7. “At least you don’t have to worry about getting pregnant when you’re not ready.”
This one mostly comes from friends of mine who have already had/or are having children. Many pregnancies start out unplanned and still end up being the biggest blessing in the family’s life. You’re right, I will never know the feeling of unplanned pregnancy. But I also would love, for just one day, the knowledge that I won’t have a hard time getting pregnant much more than eliminating that feeling.
8. “You don’t get your period. I am so jealous.”
This one is a killer. Any amount of period pain would be worth the knowledge that someday I will have a child.
9. “Well I don’t want kids anyway, that wouldn’t bother me.”
You may not, but children are my deepest desire. If that weren’t the case, I wouldn’t worry about having this condition.
10. “Do you even have kids?”
Working in education, I hear this at least once a day, namely from people who are upset or agitated with the system and would like to blame the fact that I don’t have kids on their discrepancies. If they really knew me, they would know how much that comment hurts. You never know who you’re talking to when you make comments about them not having children or understanding. It takes inner strength I didn’t know I had to remain professional with insensitive people.
These phrases can be confusing, hurtful and insensitive. They leave me feeling isolated and lost. I spend most nights feeling as though no one understands this or me. Then I think: how can that be?
One of the most recent statistics that I have read is that Polycystic Ovarian Syndrome (the most common infertility diagnosis) can affect 5-10% of women. As many as 5 million women in the United States may be affected. This statistic does not even cover women with MRKH syndrome, Premature Ovarian Failure, Endometriosis and other general infertility conditions. How is it that so many women share my fate, yet I feel so alone in the world? It is time for women who suffer from infertility to speak up and let their voices be heard. The best strength we have is one-another. Never let your voice fade to the background.
And for those of you reading this from a different perspective, the best way to communicate with a woman diagnosed with infertility, is to show your support and exercise compassion. Think before you respond, and try to realize that it’s OK not to understand. Sometimes you just have to listen. This post is dedicated to Brooke and Jen, the first friends who reached out to me about having PCOS. Thank you for giving me someone to talk to, and for knowing exactly how to listen.