There’s a word to describe a child who’s lost both parents.
There’s a word to describe a wife who’s lost her husband, and a word to describe a husband who’s lost his wife.
But there’s no word to describe a person who’s lost a child — or the potential of a child. And as a result, bringing it up is almost always a conversation stopper.
In 2012, after trying to conceive for a year and experiencing two early miscarriages, I was diagnosed with infertility. Over the next four years, I would have two more miscarriages, undergo in vitro fertilization (IVF) seven times, and give birth to stillborn twins before finally having my daughter Aurora last year.
Contrary to popular belief, infertility is not a lifestyle choice — it is a medical condition recognized by World Health Organization (WHO), American Society for Reproductive Medicine (ASRM), and the American College of Obstetricians and Gynecologists (ACOG).
What’s more, it’s incredibly common.
One in eight couples in the United States struggle with infertility. In Canada and the United Kingdom, it’s one in six couples. Worldwide, it’s one in four couples. It impacts every race, ethnicity, religion, economic status, etc.
Infertility is all-consuming — emotionally, physically, mentally, and financially draining. In fact, research has shown the stress levels of women diagnosed with infertility are equivalent to those with cancer, AIDS, or heart disease.
Lest you think infertility is a solely ‘woman’s issue,’ approximately one-third of cases in the United States are attributed to the male partner, one-third attributed to the female partner, and one-third is caused by a combination of problems in both partners or is unexplained.
What’s more, the definition of family is evolving. While not ‘infertile’ in the strict medical definition sense, singles and LGBT couples cannot build their families alone. So they too are an important part of this conversation.
All told, we’re talking tens of millions in the U.S. alone who cannot conceive ‘the old-fashioned way.’
And yet, we often remain silent and hide this big piece of who we are from friends, family, co-workers, neighbors — everyone in our lives — because ‘infertility’ is still a taboo topic.
Part of our silence is to protect ourselves. We feel ashamed — among an abundance of other emotions — for not being able to perform a basic biological function that comes easily and naturally to others.
But part of our silence is also to protect others. We know people who’ve not experienced infertility often become extremely uncomfortable and make well-intentioned, although extremely misinformed, comments just to move on from the conversation — if they don’t shut down altogether and change the subject.
This has to stop. It’s time to normalize infertility.
Don’t get me wrong, I used to be part of the problem — and I paid dearly as a result. I’m a believer in owning your mistakes, so I’m going to admit to a big one right now both in an attempt to save others from the pain I experienced and move the conversation forward.
Before becoming pregnant with my twins, I hid our struggles with infertility. Once we were ready to make my pregnancy ‘Facebook official,’ I knew there would be questions, so I ‘came out.’
But little did I know, the damage had already been done.
Maybe I would have gone into preterm labor with a singleton anyway, maybe I wouldn’t — I understandably never gave my cervix a chance to become ‘incompetent’ again and had corrective surgery a few months after Eric and Alexis died. (You can read my full story here.)
But I truly believe now, having had more than three years to reflect, that I wouldn’t have chosen to transfer two embryos if I’d been open about our journey and thus more informed about potentially grave consequences of the decision.
If my story isn’t a perfect example of why it’s time to normalize infertility, I don’t know what is.
With open communication comes education — a free-flow of ideas and information. With education comes rights — insurance coverage and other workplace benefits. With insurance and benefits comes safer, more measured decisions about how to pursue building your family.
Don’t mistake what I’m saying. This isn’t just a ‘fertiles’ problem — it’s an everyone problem.
Those of us with infertility need to be brave and contribute to the conversation. Yes, we might be — or at least feel — judged at first, but it’s a process — a process that will never get off the ground without our involvement.
So, regardless of who you are — fertile or infertile — I’m calling you out. Right now. It’s time to normalize infertility.
One way to take a big step in the right direction is tackling the issue in the workplace. But infertility is personal and belongs nowhere near work, you might be thinking.
Remember, infertility is emotionally, physically, mentally, and financially draining. You think that doesn’t impact the workplace?
Employers have a huge opportunity here.
Step 1: Knowledge and training
My company recently conducted a survey of 1,000 U.S. women and men to determine the state of infertility in the workplace. Among other findings, struggling employees reported they would feel more supported if those around them at work learned more about infertility and how to talk empathetically about it.
It’s National Infertility Awareness Week, so there’s no time like the present to educate your team.
How to do it:
- Arm employees with strong resources, such as fact sheets or informational videos from trusted organizations like ASRM, to foster a more positive and accepting work environment. Without them, employees will likely make false assumptions or unintentionally isolate the employee who is struggling.
- Instill a workplace culture that discusses topics like pregnancy and family sensitively and empathetically. This does not mean employees cannot discuss their families or their pregnancies ever again. However, it does require a mental shift from assuming everyone who wants children can easily have them.
- If an employee is open about their infertility, this situation too is all about proper etiquette. Don’t try to minimize their problem. Don’t try to solve their problem or recommend fertilization methods. And don’t gossip — learn enough to understand what infertility means, but respect their privacy.
Want to make an even bigger commitment to the cause? Sponsor me (or another advocate) so I can conduct a speaking tour to educate employees everywhere. I’m ready and willing to step up to the plate and be a strong voice for the community, but I can’t do it alone. Contact me if you might be interested in helping make this tour a reality.
Step 2: Provide non-insurance benefits
Thankfully, some companies already realize the impact infertility has on their employees. Our research found the current most offered benefits include:
- Health insurance that covers infertility
- Educational resources about infertility
- Employee assistance program
- Employee resource group
But when I say some companies, I do mean some — ‘a few’ might be even more accurate. There’s a lot of work to be done, and companies big and small can have a tremendous impact.
Our research uncovered what other benefits employees with infertility want, and in my opinion, most are doable for even the smallest organization — and every little bit counts.
How to do it:
Start by analyzing what you can afford and which benefits make sense to pursue as a result. Then, re-evaluate these offerings annually to be sure you’re providing your employees the best support possible.
- Paid medical leave that includes taking time off for infertility appointments and treatments: Determine which infertility-related appointments and treatments would qualify for paid medical leave. To better understand the process, consider starting an employee resource group (ERG) devoted to infertility or calling around to local clinics. Treat it as any other paid leave policy in terms of how and when to request paid medical leave.
- Free or discounted services (such as acupuncture, yoga, etc.): Sign up for a corporate discount program like Fond or Lifeworks. Alternatively, approach local providers of well-being services about offering bulk discounts or freebies for employees experiencing infertility. Bonus: All employees will appreciate this perk!
- The option to work from home/telecommute: An official paid medical leave policy for infertility treatments might become less necessary if your workplace offers a combination of flex-time and the ability to telecommute, either permanently or as needed. This allows employees to work around their appointments and at a time when they’re most productive. Bonus: Again, you’ll find all employees love this as an option!
- Access to a fertility coach: Contract with a company like Progyny to offer employees fertility concierge services (among other benefits), pre-pay for one or more sessions with a specific fertility coach, or purchase an employee assistance program (EAP) subscription that covers infertility support.
- Egg freezing: Egg freezing can cost as much as $10,000 initially, plus an additional $500 to $1,000 per year in storage. Consider contacting a provider like EggBanxx or Extend Fertility (offers egg freezing at a steep discount, which as of this writing is $4,990 for a minimum of 12 frozen eggs, in up to 4 cycles) to discuss corporate package options.
Step 3: Provide health insurance that covers infertility
Currently, only 15 states require insurance coverage for infertility treatment, and laws vary widely. Unfortunately, progress in this area recently actually took two steps back when the federal government dropped coverage of assisted reproductive technology (ART) procedures or services related to such procedures on all 2017 federal health plans.
Fortunately, at the state level, New York Governor Andrew Cuomo just improved the state’s mandate to include new language clarifies that same-sex couples and single women can access the medical benefits and it will be covered by their insurance.
Even though it may not be mandated, adding infertility coverage to your health insurance plan has many benefits — and doesn’t cost as much as you think.
According to a study by EMD Serono, Path2Parenthood, and RESOLVE: The National Infertility Association, 91 percent of employers offering infertility treatment have not experienced an increase in their medical costs as a result, and infertility coverage can be provided at less than 1 percent of total premium cost.
What’s more, patients with infertility benefits electively chose to transfer one embryo per cycle significantly more often than patients with no coverage, thereby reducing costs due to multiple births, and only one in three women who seek infertility services require treatment beyond basic medical advice.
How to do it:
- Contact your insurance broker about your options. If you need ideas about how to structure your plan, our research found the three most popular plans included: 1) lifetime maximum of $25,000, 2) all services covered, and 3) lifetime maximum of $10,000.
- Like the state of New York, Gusto, EY, and Ultimate Software (read more about the latter three in my Entrepreneur article), work to construct your plan to be inclusive of singles and LGBT couples.
I included health insurance last because, while extremely important, it’s only part of the conversation — and I personally believe the best way to encourage widespread adoption is to educate the masses about infertility first.
It’s your turn
You have your marching orders.
Infertiles, singles, and the LGBT community, speak up. When an opportunity to educate others presents itself — or just because you want your voice to be heard — take advantage.
Employers, listen up — and take action. You have the power to turn the tide, but as they say, with great power comes great responsibility. Your employees are struggling, and if for no other reason than to improve productivity and retention, do what you can to help.
Already offer employees great fertility benefits? Lead the conversation.
It’s time to normalize infertility.
Originally published at medium.com