The Emotional Aspects of Infertility

I knew that infertility was a difficult topic to talk about, and I feel like I've had enough close friends go through it to know something -- but even I was surprised by the statistic that 61 percent of couples experiencing infertility don't tell people about it. That's a lot of people keeping their feelings to themselves -- and I won't say it's true for all of them, but it's hard on a marriage to do that. Blame, shame, anger and regret can be toxic to a relationship. Some people I interviewed said it made them stronger. Some people said it wasn't their marriage that suffered but friendships or relationships with their parents, siblings and in laws. 

A century ago, infertility was not talked about like it is today -- but still I think we're not as open about it as we could be. There's a lot of undercurrents about sex, money and choices there and all of those are hard on their own. Oh, and some religion, too. It's fraught with time pressure, financial pressure and social pressure. I'm pleased to see people working on getting support, and the medical science is certainly improving. 

But we've got a long way to go...there's a lot of issues here for individuals, couples and families. What do they want? How do they cope when it's extremely difficult? How do they deal with the ticking clock?  And what can people who love them do to help?

Here's my story in The Health Journal, along with some tips on that:

Infertility....Has to Start with Fertility

My magazine editor asked me to write a story about infertility...maybe 900 words? And I said, "I just don't think it's possible to cover all the nuances in that amount." So, now it's a five part series! I thought I knew a lot about this, after moderating an online moms group for years, and seeing some of my best friends deal with miscarriages, blood disorders and long waits to finally get to announce their pregnancies. But after talking to many more people about this topic, I feel that it's still so much to absorb. First, people don't know many basics of fertility -- including the ages when fertility declines. I think this is a failure of our health education system that much of our information comes from celebrity magazines -- a number of people cited older actresses having babies as reassurance that they "had time." 

Here's the story, and I hope you'll keep following along!

Rounding Up

Rounding has become a buzzword in hospitals in efforts to focus on patient experience, but most non-health care people know what it means. (rounding numbers? killing weeds? corralling sheep?)

Rounding is "making rounds" to patient rooms to ensure that their needs are being met proactively. Resistance to rounding is that it's one more thing to do. People who work in hospitals are BUSY. But, the research on rounding is that it saves time because patient anxiety and dissatisfaction decrease.  Here's a study from Stanford on nurse rounding.

It's struck me, in my reading, that a patient in a hospital bed can't really think about anything else. They are afraid and full of anxiety because (especially these days) if you are in the hospital, it must be serious. When no one comes to see them, they think they've been forgotten about or that their must be terrible news that no one wants to tell them. 

So, having someone check in, to see if you need help going to the bathroom, to get something from your bag or to help you adjust your bed, can help you be more comfortable and reduce some of that anxiety. See the Four Ps: Potty, Pain, Position and Possessions.  

Personally, after the birth of one of my children, nurses took the baby (and my husband) to the nursery for tests and I was left alone for quite awhile. It felt like about two hours, but I couldn't tell you how long it actually was. I was desperately cold and really wanted some socks or slippers to warm up my feet. But I didn't want to bother a nurse to come help me put my slippers on. So I waited, miserably, until my husband returned. My frustration and anxiety levels were very high -- and this could have been avoided with better understanding of when someone would be by to check on me. 

Rounding experts (like the ones on the Association of Patient Experience webinar right now) say that it's critical to frame this practice as "not just another thing to do." It's important to make it about quality and safety.  Rounding is a practice that is practical and proactive -- Let's add those Ps as well. 

Friendliest Conference Ever? Of course -- it was about empathy!

Patient experience is close to my heart, because it's a buzzword, but it matters. I'm glad people are paying attention to how the patient views the medical experience, and not just that care is delivered effectively. 

The Cleveland Clinic's Patient Experience Summit "combines empathy and innovation," and this year's theme was Empathy Amplified.  Each presenter selected music to come on stage to and it was fun to see what they selected, from U2's "It's a Beautiful Day" to "It's the End of the World as We Know It" by R.E.M.  This set the tone for a great conference, and even though there were more than 2,000 people there, by the fourth day, I had lots of friends!

Innovation needs to be about pressing where things are bit uncomfortable and the general sessions delivered a lot of surprises. 

1. The Ostrich Index. "We ask people to operate in a self-actualized peak experience and they know they should... but they just can’t prioritize that right now. It’s not about cost, access or transportation. It may be money issues, a lack of support, conflict, stress, debt, no time to exercise, substance use, sad, not sleeping, no spiritual outlet, no sex life or caregiving demands. Stress is real." -Alexandra Drane, Eliza and Seduce Health

2. Toxic Doctors = Darth Vader. "Silence is a moral issue. Silence kills. It creates a culture that undermines safety. Darth Vaders create a toxic environment. Staff can’t breathe. This allows incompetence, shortcuts and disrespect. Inaction is an immoral act." -Dr. Wyatt, Joint Commission

3. Machines Make Fewer Mistakes. "A combination of forces approach -- care anywhere and care in teams are already hear. Care by machines? Care by large data sets? On their way. Robots don't have to be perfect, they just have to make less mistakes than humans."

Given our Darth Vaders, maybe machines would be better? I love the honesty that we may not be providing what patients (who are human) really need. They repeatedly say they want to understand what's happening to them, be involved in the decision-making process and have people be nice to them (because they are very scared.) Seems reasonable, but the giant knotted system of health care is hard to turn around. This summit was a great step in the right direction and I applaud all involved. 



The Health Journal Magazine May Issue

Don't Be On Autopilot When it Comes to Autoimmune Diseases
By Natalie Miller Moore

Thanks to all the people who helped me find these interviews!

Women in their 20s and 30sare busy—they’ve got kids and jobs and stress. So when they feel tired, or achy, they tend not to think much about it. Too many times, women write off these symptoms as unimportant. But autoimmune (AI) diseases affect twice as many women as men, and they often begin to show up mid-life.

“When I was seven months postpartumwith my son, things starting getting weird. I had headaches, I’d get dizzy. When I had really bad pains in my hands and wrists—I thought they were carpal tunnel from holding him,” said Betsy Lavin, 43, from Williamsburg, Virginia.

In Betsy’s case, it was more than that.Her symptoms of fatigue and joint painpiled up, but she thought it was normalnew mother stress... read more over at the Health Journal.