The SWAN STUDY: Gender, Identity and Menopause

The SWAN STUDY: Gender, Identity and Menopause

swan image 2I sit opposite Lila [1], the 25-year-old research assistant, in a small room at a satellite office of Mass General Hospital. She is warm and professional, and we have already discovered that she went to college at the same university where I went to graduate school. She took classes with some of my favorite professors, and we may have been in the same room at one point, when I came back to give a talk on campus. This is a nice ice-breaker. But now, in this room, Lila is in the driver’s seat. She has just finished asking me a load of questions about my health, lifestyle, and social networks. I will be there a total of four hours by the time I complete the entire process, which includes a bone density scan and a few other tests they’ve added this year.
SWAN AA woman hot flashIn 1996, right after I completed my Ph.D. in Sociology, I was randomly selected as one of 3,302 women from diverse racial/ethnic backgrounds to participate in this mid-life women’s health study called SWAN – or Study of Women’s Health Across the Nation. The study is following women as we transition through menopause, to better understand the physical, biological, psychological and social changes we experience during this period. SWAN aims to help scientists, health care providers and women “learn how mid-life experiences affect health and quality of life during aging”. [2]

SWAN participants or “subjects” were all between 42 and 52 years old “at baseline” – that, is, when the study began – and we represent seven cities around the country, including my own city of Boston.

When I got the call inviting me to join the SWAN study, I had just completed a lengthy project that involved a lot of interviewing. I welcomed the opportunity to answer someone else’s questions! It also felt great to be a part of important research that had the prospects of influencing medical science. But when I said “yes” to participating in SWAN nearly 20 years ago, I could not have predicted that I would be interviewed by at least 10 or more 20-something research assistants, most of them en route to medical school following this “real-life” experience. 


Last year, there was a funding hiatus for the study. I was having a tough year myself and barely noticed that I hadn’t gotten my annual call to set up an appointment. Then a month ago, a letter arrived. SWAN was back in biz, and I’d be getting a call soon! I was thrilled that the study was re-funded in this era of budget cuts for basic science and social science research. I was also feeling grateful that my health was back on track. It struck me that SWAN gave me a regular opportunity to reflect on my life’s circumstances, and to think about how I’m handling growing older, even if it’s only because of a series of questions read to me by a young research assistant whom I’ve just met.

Lila was trained to draw blood, and as she jabs me with the needle, I think, wow, she’s pretty good. We continue to chat, as she measures my waist and hips, clocks how fast I can walk down the narrow hallway, and how long I can balance in a variety of different positions. I’m feeling pretty cocky, until we get to the cognitive test, which they instituted about four years ago. Even though I think my memory is pretty good, being quizzed by a millennial is unnerving. I tell Lila that this test makes me anxious, and she says “yeah, everyone hates it”. That’s only somewhat reassuring, but I appreciate her attempt to normalize my response. Once it’s over – after I spat back a series of numbers and letters in order, and re-told a story about three children in a burning house being saved by a brave fire fighter – I tell myself, “good enough”. That was something my father used to say in moments of stress.

The SWAN Study has taken care to ensure that we are a diverse sample of participants.

SWAN chart hot flashes
Prevalence of hot flashes by race/ethnicity

In Boston, researchers over-sampled African-American women, meaning that the study has intentionally included a larger percentage of African-Americans than are represented in the general population. Other cities have ensured that the sample includes large numbers of Chinese, Japanese, and Hispanic women. This oversampling strategy allows researchers to investigate the influence of race and ethnicity on health outcomes of women as we age.

SWAN-affiliated researchers, Drs. Robin Green and Nanette Santoro, found that most symptoms of menopausal women varied by ethnicity. They write,

“Vasomotor symptoms were more prevalent in African-American and Hispanic women and were also more common in women with greater BMI, challenging the widely held belief that obesity is protective against vasomotor symptoms”.

They also found that vaginal dryness was present in 30-40 percent of SWAN participants at baseline, and was most prevalent in Hispanic women. But even among Hispanic women, “symptoms varied by country of origin”. The researchers conclude that “acculturation appears to play a complex role in menopausal symptomatology” and that “ethnicity should be taken into account when interpreting menopausal symptom presentation in women”.

By including an ethnically diverse sample, the SWAN Study is able to compare the experiences of women from varied backgrounds, which has pointed to important differences that should be of great benefit to health care practitioners. Moreover, SWAN researchers provide participants with information about our health, and flag issues we should explore further. For example, I discovered that I had high cholesterol, something that runs in my family. I’m now being monitored by a specialist, who asked me to take a very lose dose of a Statin. And overall, I’m more conscientious about my diet. The upshot is that my cholesterol levels are under control.

Gathering the SWANS…

SWAN jocelyn elders
Jocelyn Elders, former U.S. Surgeon General

In the past couple of decades, the SWAN team held a number of gatherings to bring Boston SWAN “subjects” together. It’s awesome to be in a room with hundreds of women with one thing in common: we are mid-life women who have gone through menopause! What fun to talk about all the crap we are experiencing without feeling judged or worrying that we might be boring someone.

The first gathering I attended offered workshops where “experts” could answer our questions about sleep (like hot flashes keeping us awake) or provide us with alternatives to Hormone Replacement Therapy. One year, SWAN researchers organized an event that featured the brilliant and outspoken Jocelyn Elders, former U.S. Surgeon General who was a lightning rod for speaking her mind, in support of legalizing marijuana, the distribution of contraceptives in schools, and even suggesting that masturbation might be a means of preventing young people from engaging in riskier forms of sexual activity. Sitting in a diverse crowd of mid-life women and cheering for Elders, whom I have admired for years, was positively thrilling.

Lila tells me a little about this year’s gathering, which I unfortunately missed. I learn that one of the Boston-based Principal Investigators, Dr. Joel Finkelstein, is a serious art aficionado and at the last SWAN Study gathering, he showed a series of paintings by an older woman. His message was that we can continue to grow and be creative as we age. When the interview is complete, Lila hands me my gift. In past years, it has been a cup or a small tote bag, marked with the graceful SWAN logo. But this year, it’s a small box, the top graced with a floral design from this artist.

SWAN box

Gift from SWAN Study

In the abstract of his 2014 application to the National Institutes of Health, Dr. Finkelstein concluded by saying, “SWAN will fill important gaps in understanding the impact of the menopausal transition and mid-life aging on women’s health and functioning in the postmenopausal years. Accordingly, it will provide useful information to guide clinical decisions in mid-life and beyond in women who have diverse life experiences and socioeconomic and racial/ethnic characteristics”.

I’m grateful to be a part of this longitudinal study, to know that the aggregate data being collected reflects a diverse population of women, and that we are collectively contributing to scientific knowledge that can improve the lives of women as we age.

Finally, here’s a great clip from Menopause, the Musical!, just for funhttps://www.youtube.com/watch?v=ndFBFXV3jjs


[1] Fictitious name
[2] The SWAN Study is co-sponsored by the National Institute on Aging (NIA), the National Institute of Nursing Research (NINR), the National Institutes of Health (NIH), Office of Research on Women’s Health, and the National Center for Complementary and Alternative Medicine.

Insomnia stories…

Insomnia stories…

insomnia

The men in my family were easy sleepers. It wasn’t uncommon to see my father and his six brothers lie down on the floor after a big meal and just nod out. Of course, that left my aunts to clean up, after they had also cooked the meal, and I bet they could have used a nap too. At the time, I figured that taking a post-meal snooze was the “way things were” for the men in the family. But gradually, as I developed a feminist consciousness, I resented these lazy guys. As my age gradually crept up to where theirs were back then, I have begun to appreciate their supreme capacity to sleep just about anywhere, anytime. My father was also one of those people who could nod out for five minutes – taking a so-called “power nap” – only to emerge refreshed and able to fully re-enter the conversation when he awoke. 

Later, when he was in his 90s, he began to experience serious insomnia, lying awake for hours and hours throughout the night, going crazy with boredom and frustration. While I sympathized with his dilemma at the time, it wasn’t until I experienced my own sustained insomnia – after a back injury – that I understood how horrible it is to not be able to sleep night after night. I discovered that sleep deprivation steals one’s energy, one’s optimism, and sometimes even one’s sanity. With increasing lack of sleep, the exhaustion compounds and the world becomes slightly, if not majorly, off-kilter. 

baby and cat

Insomnia is a lot of things, which includes having a hard time getting to sleep, as well as waking up early and having a difficult time getting back to sleep. Not surprisingly, it isn’t a contemporary phenomenon. No, we in the so-called modern world didn’t invent it. Insomnia goes way, way back. The term “insomnia” first appeared in 1623, and means “want of sleep”. One of the biggest causes of insomnia, stress, is something that people have been struggling with for eons. It’s just the nature of stress that looks slightly different these days, compared to a few centuries ago. But if you think about it, there are a lot of similarities. 

We’re stressed because we work hard or we don’t have enough work. We’re stressed because we live in a violent world that is unpredictable. We’re stressed if we experience social isolation or prejudice. We’re stressed when we don’t have enough to eat, and don’t know where the next meal is coming from. We’re stressed because our jobs are too demanding or not challenging enough. We’re stressed because we worry about paying our bills. We’re stressed because we don’t feel loved enough, or because we have tension with our partners or our friends. One might call these universal problems, and these stressers will vary based on your economic situation as well as your race, gender and sexual identity. And maybe a few centuries ago, we might have also worried about predators or major diseases that wiped out entire swaths of people. All of these stressors can lead to loss of sleep. 

sleeping pills

A lot of famous people are recorded as having suffered from insomnia. Sir Isaac Newton suffered from depression and had difficulty sleeping. Winston Churchill had two beds because if he couldn’t sleep in one, he would try the other. Thomas Edison, like my father, was a cat-napper, because he couldn’t sleep at night. Some insomniacs turned to drugs. Marcel Proust and Marilyn Monroe took barbiturates to help them sleep. English writer, Evelyn Waugh, took bromides to induce sleep. As we know, Michael Jackson died because of a lethal cocktail of medications to help him sleep, including propofal, used for sedation before surgeries, lorazepam, used for anxiety, and a host of other meds, including midazolam, diazepam, lidocaine and ephedrine. He was obviously so desperate to sleep that he was willing to try them all. 

hot milk

Author and columnist Arianna Huffington calls insomnia a “feminist issue”, and has written columns in Huffington Post lamenting her lack of sleep from jet lag. Another Huff Post columnist, Dora Levy Mossanen, calls insomnia a “smart, devious virus that mutates and changes form every season like the flu virus. Except that this tricky bugger is tuned to our circadian rhythm and is able to change and disguise itself at whim to confuse the heck out of us”. Mossanen does all the “right things”: She doesn’t drink caffeine, goes to bed at a decent hour, drinks hot milk before bedtime, takes warm baths, reads non-stimulating books, listens to guided meditation on her i-pod, and imagines serene seashores. And yet she says, “I toss and turn at the beginning of the night, counting backwards and forwards so many times that if my mind was prone to mathematics, I’d have solved all the mathematical problems of the world by now”. 

For the most part, my insomnia has cleared, but every so often it rears its ugly head. While in the midst of a minor insomniac “relapse”, I asked my friends and colleagues for their insomnia narratives. I wanted to know how long their insomnia lasted, why they thought they were struggling with sleep; what they did when they were awake; how it affected them the next day. I learned that the main causes of insomnia are: 

* Anxiety, the everyday kind like preparing to teach a class, and larger anxieties, like worrying about keeping a job; 
* Depression, which impedes relaxation necessary to fall and stay asleep; 
* Medications, because some meds like decongestants and pain meds keep us awake. Antihistamines might initially make us groggy, but they can cause excess urination which gets us up a lot during the night; 
* Alcohol, which may make you more relaxed, but prevents deeper stages of sleep and can cause you to wake up in the middle of the night; 
* Chronic pain, which is distracting and worrisome and can lead to anxiety, which prevents sleep; 
* Medical conditions, like arthritis, cancer, heart disease and Parkinson’s disease, which are linked with insomnia; 
* Poor sleep habits, like weird sleep schedules, or an uncomfortable sleep environment; 
* “Learned insomnia” – which is worrying too much about not being able to sleep, which makes it hard to get to sleep; and 
* Eating too much before sleeping or eating the wrong snack, which can give you heartburn and make it uncomfortable to fall sleep. 

In response to my call for insomnia stories, only women replied. I know that isn’t because men don’t experience insomnia; but perhaps men don’t want to reveal their sleeping problems publicly, even though I promised confidentiality. (It’s not too late, for my male readers!)

One woman said, “You do realize you’ve opened the floodgates, yes? Amazing topic. Of course, I’m too sleep-deprived and deep into end-of-semester madness to respond right now! Maybe during my next bout of insomnia (perhaps tonite). ;-)” 

Here are a few responses from other insomniacs: 

One woman says, “Funny you should ask, as I am suffering from insomnia just now, maybe a week long bout this time, but by far not the longest ever. I wake up about 4am and cannot fall back asleep if my life depended on it. Not sure why I have such a hard time staying asleep, maybe it’s hormonal (menopause) or maybe it’s all the craziness at the office (new department chair, no office support as the old secretary retired, research lagging, …). Often I am not the only one awake, as my spouse is also a stressed-out insomniac. I typically try to fall back asleep, but if it doesn’t happen, I get up and read in the living room until I feel exhausted from being up at 4 am. What sometimes works is counting backwards from 100 in another language. Needless to say, the next day I feel a bit out of it, but nothing like the “zombieness” I did when my child used to wake me up. I am not desperate yet, but may try to find my melatonin from the previous bout to get me back on track. Sometimes it works, sometimes it doesn’t”. 

Another woman says, “My insomnia stories are boring. I get up and clean the house, read, catch up and/or get ahead on my work. That makes me feel like I am not wasting my time trying to fall asleep. Usually that day I am racing, energetic and feel good about all I have accomplished. By that night I am crashing and I pay the next day in bodily aches/pain. Not very exciting…”

Another says, “I have had quite a few episodes of insomnia. There were times when I would go days or even a week without adequate sleep. I would either fall asleep and then wake up in the middle of the night and not be able to go back to bed, or I would just simply stare at the ceiling until I finally fell asleep, only to wake up about every half an hour for the rest of the night. Either way, insomnia sucks! I eventually couldn’t take it any longer and sought medical help. Come to find out, I have general anxiety disorder and that was greatly affecting my sleep. Even now – I am on medication- I still have bouts of insomnia when I am highly stressed. My mind is constantly going, so when something important is coming up I find myself having trouble sleeping. In the middle of the night I have tried a number of things: read a book, go to the gym (thank you, 24 hour fitness), eat, watch TV, and try and go back to sleep. As a student, during the day I am pretty much reading, writing, researching, or preparing for a class I TA for. 

“After a night of insomnia, I usually feel terrible the next day. Even if I am tired, I don’t try and nap because if I do, the likelihood of getting a good night’s sleep decreases. If I go a few days or even a week without sleep, my brain has pretty much checked out. I go through the motions but I don’t feel like I am really all there. Hopefully that makes sense. Insights? I would say that everyone is different and should try different things to help them sleep. I hate taking medicine, even when I am sick, so seeing a doctor was the last thing on my list. I tried doing yoga, eating better, not watching TV or reading at night…but nothing helped me. Being put on medication was a great relief because I sleep really well, for the most part”. 

And finally, one of my neighbors says, “Sometimes I look out the window to see who else might be up in the neighborhood. I am tempted to text them or call and get together, maybe we should start an insomniac club”. 

That sounds tempting… I suppose that one strategy I’m employing is writing this post. Maybe “outing myself” as an insomniac will help diffuse the potency of this insidious problem. If I were to characterize my current “brand” of insomnia, it’s “learned insomnia”, meaning that I begin to fall asleep and then just as I’m fading into a hazy fog, my brain says “you’re falling asleep”, at which point I’m awake! Luckily, the problem has lessened since I first put out the call for insomnia stories. May it fade away! 

Tell me your insomnia story! What has helped you overcome your sleeplessness? 

sleep couple

Insomnia stories…

The men in my family were easy sleepers. It wasn’t uncommon to see my father and his six brothers lie down on the floor after a big meal and just nod out. Of course, that left my aunts to clean up, after they had also cooked the meal, and I bet they could have used a nap too. At the time, I figured that taking a post-meal snooze was the “way things were” for the men in the family. But gradually, as I developed a feminist consciousness, I resented these lazy guys. As my age gradually crept up to where theirs were back then, I have begun to appreciate their supreme capacity to sleep just about anywhere, anytime. My father was also one of those people who could nod out for five minutes – taking a so-called “power nap” – only to emerge refreshed and able to fully re-enter the conversation when he awoke. 

Later, when he was in his 90s, he began to experience serious insomnia, lying awake for hours and hours throughout the night, going crazy with boredom and frustration. While I sympathized with his dilemma at the time, it wasn’t until I experienced my own sustained insomnia – after a back injury – that I understood how horrible it is to not be able to sleep night after night. I discovered that sleep deprivation steals one’s energy, one’s optimism, and sometimes even one’s sanity. With increasing lack of sleep, the exhaustion compounds and the world becomes slightly, if not majorly, off-kilter. 

Insomnia is a lot of things, which includes having a hard time getting to sleep, as well as waking up early and having a difficult time getting back to sleep. Not surprisingly, it isn’t a contemporary phenomenon. No, we in the so-called modern world didn’t invent it. Insomnia goes way, way back. The term “insomnia” first appeared in 1623, and means “want of sleep”. One of the biggest causes of insomnia, stress, is something that people have been struggling with for eons. It’s just the nature of stress that looks slightly different these days, compared to a few centuries ago. But if you think about it, there are a lot of similarities. 

We’re stressed because we work hard or we don’t have enough work. We’re stressed because we live in a violent world that is unpredictable. We’re stressed if we experience social isolation or prejudice. We’re stressed when we don’t have enough to eat, and don’t know where the next meal is coming from. We’re stressed because our jobs are too demanding or not challenging enough. We’re stressed because we worry about paying our bills. We’re stressed because we don’t feel loved enough, or because we have tension with our partners or our friends. One might call these universal problems, and these stressers will vary based on your economic situation as well as your race, gender and sexual identity. And maybe a few centuries ago, we might have also worried about predators or major diseases that wiped out entire swaths of people. All of these stressors can lead to loss of sleep. 

A lot of famous people are recorded as having suffered from insomnia. Sir Isaac Newton suffered from depression and had difficulty sleeping. Winston Churchill had two beds because if he couldn’t sleep in one, he would try the other. Thomas Edison, like my father, was a cat-napper, because he couldn’t sleep at night. Some insomniacs turned to drugs. Marcel Proust and Marilyn Monroe took barbiturates to help them sleep. English writer, Evelyn Waugh, took bromides to induce sleep. As we know, Michael Jackson died because of a lethal cocktail of medications to help him sleep, including propofal, used for sedation before surgeries, lorazepam, used for anxiety, and a host of other meds, including midazolam, diazepam, lidocaine and ephedrine. He was obviously so desperate to sleep that he was willing to try them all. 

Author and columnist Arianna Huffington calls insomnia a “feminist issue”, and has written columns in Huffington Post lamenting her lack of sleep from jet lag. Another Huff Post columnist, Dora Levy Mossanen, calls insomnia a “smart, devious virus that mutates and changes form every season like the flu virus. Except that this tricky bugger is tuned to our circadian rhythm and is able to change and disguise itself at whim to confuse the heck out of us”. Mossanen does all the “right things”: She doesn’t drink caffeine, goes to bed at a decent hour, drinks hot milk before bedtime, takes warm baths, reads non-stimulating books, listens to guided meditation on her i-pod, and imagines serene seashores. And yet she says, “I toss and turn at the beginning of the night, counting backwards and forwards so many times that if my mind was prone to mathematics, I’d have solved all the mathematical problems of the world by now”. 

For the most part, my insomnia has cleared, but every so often it rears its ugly head. While in the midst of a minor insomniac “relapse”, I asked my friends and colleagues for their insomnia narratives. I wanted to know how long their insomnia lasted, why they thought they were struggling with sleep; what they did when they were awake; how it affected them the next day. I learned that the main causes of insomnia are: 

* Anxiety, the everyday kind like preparing to teach a class, and larger anxieties, like worrying about keeping a job; 
* Depression, which impedes relaxation necessary to fall and stay asleep; 
* Medications, because some meds like decongestants and pain meds keep us awake. Antihistamines might initially make us groggy, but they can cause excess urination which gets us up a lot during the night; 
* Alcohol, which may make you more relaxed, but prevents deeper stages of sleep and can cause you to wake up in the middle of the night; 
* Chronic pain, which is distracting and worrisome and can lead to anxiety, which prevents sleep; 
* Medical conditions, like arthritis, cancer, heart disease and Parkinson’s disease, which are linked with insomnia; 
* Poor sleep habits, like weird sleep schedules, or an uncomfortable sleep environment; 
* “Learned insomnia” – which is worrying too much about not being able to sleep, which makes it hard to get to sleep; and 
* Eating too much before sleeping or eating the wrong snack, which can give you heartburn and make it uncomfortable to fall sleep. 

In response to my call for insomnia stories, only women replied. I know that isn’t because men don’t experience insomnia; but perhaps men don’t want to reveal their sleeping problems publicly, even though I promised confidentiality. (It’s not too late, for my male readers!)

One woman said, “You do realize you’ve opened the floodgates, yes? Amazing topic. Of course, I’m too sleep-deprived and deep into end-of-semester madness to respond right now! Maybe during my next bout of insomnia (perhaps tonite). ;-)” 

Here are a few responses from other insomniacs: 

One woman says, “Funny you should ask, as I am suffering from insomnia just now, maybe a week long bout this time, but by far not the longest ever. I wake up about 4am and cannot fall back asleep if my life depended on it. Not sure why I have such a hard time staying asleep, maybe it’s hormonal (menopause) or maybe it’s all the craziness at the office (new department chair, no office support as the old secretary retired, research lagging, …). Often I am not the only one awake, as my spouse is also a stressed-out insomniac. I typically try to fall back asleep, but if it doesn’t happen, I get up and read in the living room until I feel exhausted from being up at 4 am. What sometimes works is counting backwards from 100 in another language. Needless to say, the next day I feel a bit out of it, but nothing like the “zombieness” I did when my child used to wake me up. I am not desperate yet, but may try to find my melatonin from the previous bout to get me back on track. Sometimes it works, sometimes it doesn’t”. 

Another woman says, “My insomnia stories are boring. I get up and clean the house, read, catch up and/or get ahead on my work. That makes me feel like I am not wasting my time trying to fall asleep. Usually that day I am racing, energetic and feel good about all I have accomplished. By that night I am crashing and I pay the next day in bodily aches/pain. Not very exciting…”

Another says, “I have had quite a few episodes of insomnia. There were times when I would go days or even a week without adequate sleep. I would either fall asleep and then wake up in the middle of the night and not be able to go back to bed, or I would just simply stare at the ceiling until I finally fell asleep, only to wake up about every half an hour for the rest of the night. Either way, insomnia sucks! I eventually couldn’t take it any longer and sought medical help. Come to find out, I have general anxiety disorder and that was greatly affecting my sleep. Even now – I am on medication- I still have bouts of insomnia when I am highly stressed. My mind is constantly going, so when something important is coming up I find myself having trouble sleeping. In the middle of the night I have tried a number of things: read a book, go to the gym (thank you, 24 hour fitness), eat, watch TV, and try and go back to sleep. As a student, during the day I am pretty much reading, writing, researching, or preparing for a class I TA for. 

“After a night of insomnia, I usually feel terrible the next day. Even if I am tired, I don’t try and nap because if I do, the likelihood of getting a good night’s sleep decreases. If I go a few days or even a week without sleep, my brain has pretty much checked out. I go through the motions but I don’t feel like I am really all there. Hopefully that makes sense. Insights? I would say that everyone is different and should try different things to help them sleep. I hate taking medicine, even when I am sick, so seeing a doctor was the last thing on my list. I tried doing yoga, eating better, not watching TV or reading at night…but nothing helped me. Being put on medication was a great relief because I sleep really well, for the most part”. 

And finally, one of my neighbors says, “Sometimes I look out the window to see who else might be up in the neighborhood. I am tempted to text them or call and get together, maybe we should start an insomniac club”. 

That sounds tempting… I suppose that one strategy I’m employing is writing this post. Maybe “outing myself” as an insomniac will help diffuse the potency of this insidious problem. If I were to characterize my current “brand” of insomnia, it’s “learned insomnia”, meaning that I begin to fall asleep and then just as I’m fading into a hazy fog, my brain says “you’re falling asleep”, at which point I’m awake! Luckily, the problem has lessened since I first put out the call for insomnia stories. May it fade away! 

Tell me your insomnia story! What has helped you overcome your sleeplessness?