by Carolyn Thomas ♥ @HeartSisters
I used to offer to sell to my non-Ukrainian friends the guest list from our big Ukrainian wedding. Imagine 450 names, all of whom were raised in a wonderful Slavic culture that knows what to do when hard times strike. No sooner do they hear of a friend or neighbour’s problems (like a family tragedy or a serious health crisis) – and they start pitching in to help. Such support often starts with baking, cooking and getting the casserole dishes lined up on the kitchen counter for imminent delivery to the freshly-stricken person’s fridge. Researchers know that having social support like this from others following a heart attack (or any serious health crisis) helps not only with physical recuperation, but also with emotional and psychological recovery, too. Yet virtually all published health research on the important quality-of-life issue of social support so far has been done on men.
White men.
White men, almost all of them seniors.
So lots of old white men studied, but very few women – and very few patients of either gender who were younger than 55 years of age. But the VIRGO study published in the Journal of the American Heart Association finally attempts to address this gap.(1) . . .
The patients participating in this research were 3,400 recent heart attack survivors under age 55 from both the U.S. and Spain who were assessed in hospital, and then followed up again one year after their cardiac events. To determine how individual social support affected later quality-of-life outcomes, each person was asked a number of questions based on a commonly-used social support assessment tool called ESSI (ENRICHD Social Support Instrument), such as:
- Is there someone available to whom you can count on to listen to you when you need to talk?
- Is there someone available to you to give you good advice about a problem?
- Is there someone available to you who shows you love and affection?
- Is there someone available to help with daily chores?
- Can you count on anyone to provide you with emotional support (talking over problems or helping you make a difficult decision)?
- Do you have as much contact as you would like with someone you feel close to, someone in whom you can trust and confide in?
- Are you currently married or living with a partner?
By the way, last time you were hospitalized, did any doctor or any nurse or any social worker or any janitor or anybody at all employed by your hospital ask you this list of questions before you were discharged?
Me neither . . .
The lead author of this study was Dr. Harlan Krumholz from Yale University School of Medicine, who explained:
“In this study of young patients with acute myocardial infarction (AMI – or heart attack), patients with low social support presented with poorer mental health functioning and more depressive symptoms at the time of AMI than patients with moderate/high social support.
“These differences across social support groups persisted at 12 months following AMI, which resulted in poorer 12‐month mental health and quality‐of‐life outcomes in patients with low social support.”
The authors of the JAHA study were also interested in studying female heart attack survivors under the age of 55. Here’s what they wrote:
“Young women may represent a group at particularly high risk of low social support.
“Although population‐based studies have found that both receiving and giving support decline as age increases, reports in the cardiac literature have generally shown lower levels of social support in young patients after heart attack.
“However, in all of these studies, the average age of patients was still over 60 years.”
It turns out, say the researchers, that almost nothing is known about the magnitude of social support in younger heart patients under 55. And although studies in the general population report larger and more varied social networks in women than in men, nearly all studies in cardiac populations have noted lower support in women no matter what their age.
How can this be? Researchers suggest that these gender differences may be the result of women’s roles as primary caretakers, prompting them to minimize the impact of their disease in order to avoid burdening others. Research in the general population has also shown that while older patients are more likely to rely on their immediate family for help, younger patients tend to include fewer family members but more friends and co-workers in their support networks. *See links below to online and virtual suppport groups available from WomenHeart: The National Coalition for Women With Heart Disease.
Younger people (both the ones who are patients as well as those who are those friends and co-workers now expected to provide social support to patients) may experience more stress from work, raising a family or social obligations – all of which may compromise their previously-established support structures.
(To test this theory, just try having a newborn baby and then watch your capacity to whip up casseroles for your sick friends evaporate . . .)
In fact, say the study authors, research has consistently shown that younger people require larger social networks than older people just to maintain a sense of well-being.
Research on social strain published in 200o in the Journal of Social and Personal Relationships similarly suggests that, while negative social exchanges are related to lower positive mood and life satisfaction for younger and middle-aged adults, the impact of such negative relationships is often less among older adults(2). For example, older adults may be able to ignore problems with their close social partners because they know that these relationships are also a source of emotional closeness and intimacy to them over time. These findings, say this study’s authors, may help to explain how older adults assess their social relationships more positively – even in the face of what appears to be lack of social support.
But when it comes to women and their heart disease diagnoses, there’s far more going on that just sitting around waiting for casserole deliveries from your social support networks. For example, as the JAHA study’s researchers add:
“Women may also receive less information about their cardiac disease and cardiac rehabilitation, and experience a lack of belief in their heart problems from providers.
“Thus, young women may be at increased risk of low social support both at the time of their heart attack and during the course of recovery, which may place them at higher risk of adverse outcomes.”
But wait. There’s more – and none of it is good news for women heart patients.
Although this JAHA study looked specifically at younger women, a Swedish study found that traditional gender-role patterns may also influence the social supports and recovery of all-age heart attack survivors – especially women.(3)
Authors of this study, published in the Journal of Advanced Nursing, wrote:
“Women survivors used a variety of coping strategies, and more often than men. Women minimized the impact of the disease, tended to delay in seeking treatment, and did not want to bother others with their health problems. Household activities were more important to them than to men. Men were more likely to involve their spouses in their recovery than women were.
“Women tended to report that they had less social support up to one year after a myocardial infarction compared with men.
“They received less assistance with household duties from informal caregivers. Men tended to report more support from their spouses than did women.”
.
(1) Effect of low perceived social support on health outcomes in young patients with acute myocardial infarction: results rrom the VIRGO (Variation in Recovery: Role of Gender on Outcomes of Young AMI Patients) study. Harlan Krumholz, Emily M. Bucholz et al. J Am Heart Assoc. 2014; 3: e001252.
(2) Social support and strain from partner, family, and friends: costs and benefits for men and women in adulthood. Walen HR, Lachman ME. J Soc Pers Relat. 2000; 17:5–30
(3) Myocardial infarction: gender differences in coping and social support. Marja-Leena Kristofferzon et al. Journal of Advanced Nursing. doi: 10.1046/j.0309-2402.2003.02815.x November 2003
Q: How did your social support circle help your own recovery?
- *WomenHeart: The National Coalition for Women With Heart Disease has a couple of support options that might help. One is their online support community, free to join, with over 28,000 other members worldwide, all women living with heart disease (including a topic subgroup called Young Survivors). They also offer virtual support groups, free to join, with regularly scheduled small groups of about 12 women participating by phone in one-hour support meetings led by trained facilitators, with meeting topics scheduled on Heart Failure, Atrial Fibrillation or Heart Disease in general.
Social isolation is hurting your heart
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Does getting older mean getting happier?
Ten helpful things to say to a sick friend
What (not) to say when you’re visiting the sick
Caring for elderly parents: why daughters pay a heavier toll than sons
When being married makes being sick worse
When you live with a serious illness – and a bad marriage
Marriage triples our bypass surgery survival rates – but only if it’s happy
Heart Sisters 
I had open heart surgery 6 mon ago and am only 44 years old. It has been a tough road emotionally more than physically. I keep busy with my children but it has been emotionally challenging. Would love to join a support group.
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Hello Aruna and thanks for your sharing your perspective here. Recovering physically is one thing, but recovering emotionally is quite another. If a support group is not available near your home, WomenHeart: The National Coalition for Women With Heart Disease has a couple of support options that might help you. One is their online support community, free to join, with over 28,000 other members worldwide, all women living with heart disease (including a subgroup called Young Survivors). They also offer Virtual Support Groups, free to join, with regularly scheduled small groups of about 12 women participating by phone in one-hour support meetings led by trained facilitators, with meeting topics scheduled on Heart Failure, Atrial Fibrillation or Heart Disease in general. See if either of those help. Best of luck to you…
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The notion of “my support circle” gave me pause. When I had open heart surgery at age 48, my children were grown and living in other parts of the country. My siblings lived thousands of miles away. I had had to retire from work 2 years earlier due to congestive heart failure (so I had no colleagues), and my life was confined to 1 floor of our house because I could not climb stairs. Even talking on the phone was tiring, so my social life was virtually nonexistent. The one good friend who would have liked to help me was herself recently disabled. My husband coped with his worry about me by doing the basics at home and getting very preoccupied with his work.
I was fortunate that my 70-something mother was able to fly across the country to stay with us to help. She came in time to be here for the surgery. There were complications so my hospital stay was about 10 days out of Mum’s allotted 2 week stay. I did my best to assure her and my distant children that I was doing better every day, although I was worried about how I would cope when Mum was gone. A public health nurse visited regularly to assess me (a service that has long since been cut). Within a few days of my mother’s departure I was back in the hospital, with a lung full of fluid. A few days later, with the fluid removed, I was stable so I was again discharged.
After the second discharge, I did start to recover. I was referred to cardiac rehab, where I joined a group of mostly men, everyone least 10 years my senior. Getting there each of 3 mornings a week was very difficult, because I had and have Chronic Fatigue Syndrome and insomnia so getting to sleep is very tough, but getting up in the morning is next to impossible because that’s when I’m finally getting deep sleep. The cardiac rehab program was excellent & I made a good recovery.
In 2011, when my husband was going through outpatient pre-op assessment before his own open heart surgery, we met a hospital social worker, along with an anesthesiologist, etc.. I was very impressed that the psychosocial & practical needs of the cardiac patient were being addressed proactively!
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Hi Jennifer – that’s so encouraging about your 2011 experience meeting the social worker with your hubby. I wish all hospitals included psychosocial factors in pre-op assessments. Your own story is a compelling example of how a debilitating illness can make forming and maintaining a social network outside of immediate family so challenging. I think that’s why online support communities (like WomenHeart for example) can be so helpful for those who are housebound. Our online friends can’t come to our home with a casserole, but they can be a willing (online) shoulder to cry on, or a like-minded resource when you’re having questions or problems. And they’re open 24/7…
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I am a female who suffered a massive heart attack at age 38 (this past June). I was never asked those questions in the hospital. I have a social support network that mainly consists of immediate family, friends, and co-workers. I think that many people don’t know how to talk to you or “deal with you” after a heart event. I feel like some people are stand-offish with me. Of course, my close friends have been great. I am looking to join other support networks/organizations to speak to other heart attack survivors to help in my recovery process. I also started a blog to connect with others and help me cope.
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Thanks for that perspective – your experience with some people having trouble “dealing with you” is not uncommon. Even when they want to say or do the right thing (especially around such a young heart attack survivor) many feel uncomfortable or worried they won’t – so they clam up. We have to choose wisely which of our closest support people we decide to confide in. You might want to check out the online support community at WomenHeart. Best of luck to you…
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Perhaps lower social support also is a reflection of broad assumptions about heart attack survivors and who they are. Younger individuals, and women, don’t fit the preconceived narrative – and we all tend to ignore the outliers that don’t fit neatly into the narrative, don’t we? (Well, not me anymore – I have become so much more conscious of this issue.).
It’s pretty amazing how this carries over into so many other areas. I was in my 30s when dxd with cancer and I frankly felt invisible most of the time, both as a younger person and as a younger woman with something other than breast or ovarian cancer. Support services, patient literature and even the public perception all seemed designed for the norm… which I was not.
I think this can color our experiences of illness and chronic health challenges in negative ways that have not really been acknowledged or even recognized.
Keep on challenging the status quo, Carolyn!
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Oh, such a good point, Anne! It’s also the universal plight of those with an invisible illness – particularly if we don’t fit somebody else’s stereotype of what a person diagnosed with a serious medical condition is “supposed” to look like – and young people are not “supposed” to be sick. I hear similar observations from women who have survived heart attacks caused by Spontaneous Coronary Artery Dissection (SCAD) – almost always young, healthy women with few if ANY cardiac risk factors, so they do not fit the profile….
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Multiple studies have documented a link between lower social support and higher levels of distress for a whole range of acute and chronic conditions. But I’ve noticed that the researchers often treat these as co-equal, i.e., existing side by side, rather than exploring the potential cause and effect relationship.
For someone who’s distressed, it’s probably harder to reach out and connect socially and ask for support. But it also can be the other way around: when someone doesn’t have the social support because they or their illness is perceived as invisible, it adds to their burden and leads to distress.
It was interesting to read the research you cited on age and gender differences. Clearly this is not a case of one size fits all.
Given the way society is evolving, you have to wonder about the future of social support structures. Families are smaller, with fewer siblings, more complicated relationships when there’s household blending, families living at a distance from each other, etc. The old model of “mom lives across town and can bring over some chicken noodle soup when you’re sick” can no longer be taken for granted, yet health care services often are designed with the assumption that there’s family nearby to take care of you.
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Well said, Anne. Not only do health care services appear to assume that somehow family or friends will care for you once the medical system is done with you, but – as one study found – 91% of patients diagnosed with one or more chronic conditions leave hospital with NO written discharge plan. What do care providers think will happen to these patients once they’re back home? Do they know or even ask about any existing support networks to fill in care gaps? And, as I mentioned below to Elizabeth, do increasingly short length of stay targets before hospital discharge contribute to our growing rates of stessful, dangerous and costly hospital re-admission?
And more importantly, if you and I and other patients can readily identify these issues, why aren’t health care decision-makers flagging them too?
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I was very lucky because for many years before I had my heart valve replaced I belonged to a chat forum for others with heart valve disease. My mom had unplanned beating heart double bypass three weeks before I had my planned surgery. I was there on the phone when my mother was recovering from her surgery and she was there for me on the phone after I had my full open chest surgery. My mom was only in the hospital for five nights and I was in the hospital for eight nights.
At the time I was still trying to get my health insurance to finish paying for my husband’s cardiac rehab from the previous year. After having surgery it took me three months to get my health insurance company to audit all my claims and to write me a check because I had overpaid my surgeon’s office. I did my cardiac rehab for free at a cancer wellness center (I sat in a chair when everyone went to the mat on the floor). I had stage one breast cancer (women do not die from stage one breast cancer) three years earlier. Eleven days after having surgery I show up for a class at the cancer center. My cancer friends were all there.
Look at what is offered for free to anyone that has or had at one time had cancer.
Why is this not available to heart disease patients?
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Wow, Rebecca – what a family history of medical adventures you have been through. I just love the image of you on the phone supporting your mother, and then her on the phone doing exactly the same for you. Your question about why heart patients aren’t offered the kind of comprehensive support that cancer patients get was exactly my question too when I wrote “Where’s the Survivorship Model for Heart Patients?”
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I was asked by several people, “How did we miss you in the hospital?” The Heart Support Group, Dietician, Head of Cardiac Rehab, they all asked me this. Maybe it was because I was “bum rushed” through the hospital. Seven hours total from ER to the street after an MI requiring a stent. It then took me almost a month to get a Cardiac appointment and another 2 to get into Rehab. By then I had already been back to work for over a month.
My disabled, retired husband tried to be supportive. My Mother was going through chemotherapy in another state. All I had for support was my high stress job and co-workers.
Almost through with Rehab when someone asked how they missed getting me into the “talk” therapy portion of Rehab. There I sat, a young woman in a room full of older men, supposed to chat about my heart attack, even the therapist was male. I went twice, they had nothing for me. Besides, you don’t send a Nurse who specializes in Geriatrics into a room full of elderly men… Caregiver mode took over, I can’t help it.
Thank you for this outlet, Carolyn. It is helpful to be able to vent here.
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Elizabeth, you covered so many important points – where to start? First, too-early hospital discharge, I’m convinced, is responsible for too-high and dangerous re-admission rates. And (as I wrote here in Why Aren’t Women Heart Attack Survivors Showing Up For Cardiac Rehab?) one reason women don’t attend rehab – even if they’re lucky enough to be referred by their physician (2/3 are NOT!) – is that if they’re already back to work, many do not think of themselves as still needing “rehabilitation”. And don’t get me started on going to cardiac rehab filled with elderly men when you’re a woman in your 50s. Lovely people, but I simply could not relate to their retirement living/vacation cruises/golf schedule conversations.
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Carolyn,
It is definitely a testament to you as a writer because once again, I feel as though you wrote this article directly about me.
I was 52 when I suffered my heart attack and not only did I downplay it, before and after finally going to the hospital 2 weeks later, I was more concerned about my family than I was about myself. My children were then 17 and 21 years old, and I was determined to assure them that I was fine. My family, my Mom and siblings all lived far away and I wouldn’t allow any of them to come while I was in the hospital or after. I reassured friends who came to visit that I was fine, fortunately many of them continued to come and offered help, meals and support.
I don’t know if it was because of all of this or whether it would have happened anyway, but I pushed myself to “get well” quickly and completely. I am thankful that I didn’t have a repeat event because of how much I pushed myself.
Thanks again for recognizing the importance of support for all women. Keep up the good work!
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Thanks so much for your thoughtful response, Eve. You describe perfectly how – even when we do have family, sibs, spouses and friends around us – women tend to minimize our needs for that support. Don’t be a bother. Don’t make a fuss. Everything is fine, just fine… For example, I remember thinking after my own heart attack that, even though people repeatedly told me “Call me if there’s ANYTHING I can do to help you!”, there’s no way on earth I would ever call to ask for, let’s say, help changing the kitty litter! So there are two issues here: women should cultivate a social support network around them to enhance basic mental health, AND women must be willing to both ask for and accept that support.
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Grrrrrrrrrrrreat article (of course I’ve come to expect no less from you . . . )
You’ve touched on something I’ve thought of as I’ve aged. My friends are all in worse shape than I am and I’m all that’s left in my family. I could use a good Ukrainian family or two.
Perhaps we all need to really rethink living arrangements. Clustering people in multi-generational living spaces that preserve our natural environment (instead of sprawling suburbs and covering the earth with concrete & asphalt) AND creating supportive “communal living” is beneficial for both young and old alike. Perhaps healing our planet and healing the people on it are more intimately connected than we know.
(Dean Ornish, MD’s original ground breaking research on reversing heart disease had as a major component social support.)
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No pressure, of course, to keep coming up with grrrrrreat articles… Thank you Judy-Judith for your thoughtful comments here. Thanks also for the Dean Ornish reminder. He’s better known for his rigid diet (I have yet to meet a real live heart patient able to stick to it) but you’re so right – social support is also one of what he calls the Ornish Spectrum recommendations, e.g. “We are creatures of community. Those individuals, societies, and cultures who learned to take care of each other, to love each other, and to nurture relationships with each other during the past several hundred thousand years were more likely to survive than those who did not.”
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