Stigma and Bias
We spoke to a number of women with heart failure (HF) of all ages, who said that they felt judged on their appearance, age, stage of life or just because they were women. When seeking care, providers often attributed heart symptoms to other causes like menopause, drinking, smoking, drug use or other lifestyle factors, therefore denying some women appropriate tests and care for heart issues
Many women that we interviewed described feelings of being ignored or dismissed by health care providers. These women felt that the biases and assumptions they experienced about their condition influenced the quality of care they received when presenting in emergency departments and cardiology clinics. Younger women experienced age-related bias and were often dismissed by health professionals who felt that they were ‘too young’ to have heart issues, or that they did not physically look like the ‘typical’ HF patient. These comments seemed to underscore the common belief that HF is an ‘old persons disease’ and left the younger female heart patients in this study feeling that they received limited or no information or resources that were age appropriate or relevant to them. Some women described leaving appointments feeling ignored and as though they were not taken seriously, while others felt that they were not believed or that their symptoms were all in their heads.
‘Why the devil are you here?’
Half of the women in this study were under 50 years of age when diagnosed with HF, with almost a third being under 30 years old and therefore not typical heart patients, who tend to be older. Facing curious and sometimes doubtful providers, these women have to be ready to persist to get the care they need. Feelings of blame or not belonging were reported. Jennifer addresses this issue: “whenever I am presenting to a new doctor, and they might have read my file, you know, the first thing they say to me is. ‘Are you sure it’s you?’” because she doesn’t fit the typical profile of a person with heart disease or stroke. Jenny said “in one of our Facebook groups, somebody posted a little meme. It was ‘Oh you’re too young to have that’. And then it was, ‘Thanks. I’ll let my chronic illness know’”
Susan2's heart diagnosis was missed while she was treated for pneumonia.
Transcript
Eventually, after the second round of antibiotics, we went back to the family doctor. And at that point, she said, ‘Okay I’m going to send you to the hospital and let somebody else look at you.’ Okay, so we went to the hospital and the first thing the doctor that […]
People were curious when Deb went to a clinic with her 7-year-old child.
Transcript
So, whenever I find myself in the hospital, in doctor’s office – you know at first in my forties – I was a bit of a curiosity because generally, most of the patients in the cardiac office is 60 plus and here I am sitting there with a 7-year-old son […]
Dido felt judged when she didn't look like a typical heart patient.
Transcript
I also found that being 51 at the time and newly diagnosed, there were a lot of quizzical looks. When cardiologists or health care practitioners walked into the room to deal with a heart failure patient, and I was sitting there – a 51-year-old woman and apparently I didn’t look […]
Resources Geared Toward Older Adults
Education and information resources and programs for people living with heart failure are geared toward older people (primarily men) and the women said that such resources were not relevant or useful to their lives or situations. [See our page on Finding Information & Cardiac Rehab].
Stevie feels that the rehab program was not relatable to someone in their 20s.
Transcript
I found the tour [of a cardiac rehab program] super awkward because I was like the youngest by like 30 years easily. I was 28 at the time. So, ya – and they don’t see many people in their 20s in there. And I just found that awkward so that […]
Naomi expresses the need for age-appropriate resources.
Transcript
The heart failure booklets that they would give us in hospital, I’m like ‘I don’t have – I have not had blood pressure problems ever in my life. I’m not 80’ and I, you know like also the photo on front – this old man with a cane and I’m […]
All in Your Head / Not Being Believed
Some of the women that we interviewed said that they felt like health care providers did not believe them. Worse yet, some women were accused of lying about their symptoms or had providers say that symptoms were ‘all in their heads’. Anne1 advises “women can be, their problems can be brushed aside, as if it’s all in your head. And if someone tells you that it’s all in your head – then you should go and ask for another opinion.”
Lise (and her doctor) worried that her symptoms were all in her head.
Transcript
But men – when they go and complain – right away they go ‘okay let’s take this – you’ve got all the symptoms but for a woman, it’s not. For a woman, they come up with everything. Your weight, your age, your hormones. Everything they come up with, that they […]
Amanda was accused of lying when she didn't respond in the typical way to a medication.
Transcript
Then I started to retain fluid. This doctor gave me some Lasix – oral Lasix at first and he said – like the doctor told me, ‘You’ll be peeing so much you’ll be sitting in the bathroom all the time. And that kind of thing’. And each time I went […]
Ginette's doctors and nurses doubted her, while in ER for heart attack.
Transcript
Through the whole thing I could hear them talk and say, ‘She’s not having a heart attack, she’s probably taking … it’s, you know, it’s anxiety.’ And they were asking my boyfriend if I was like a nervous person and I was like [sigh] really, you know? I was so […]
Menopause/’Hormonal’ Causes and Other Assumptions
Some of the women told us that their doctors blamed their symptoms and concerns on being ‘a woman’ – a result of hormones and/or menopause. Others spoke about healthcare providers making assumptions about them based on their appearance, blaming their heart failure on smoking, drug use, or other lifestyle causes.
Lori talks about her doctor dismissing her symptoms as just part of being a woman.
Transcript
And they again were just like, ‘No, you’re fine’ and the doctor came back to me with a questionnaire for anxiety in the congenital – adult congenital cardiac patient and said, ‘Well, fill this out because it’s your – you know this is what it sounds like is happening – […]
Joanne found 'menopause' is often the diagnosis for women's issues.
Transcript
Being a woman, you just you don’t even think about it. ‘Oh, it’s menopause. It’s your age’. You just chalk it up and my joke that I always say is ‘Being a woman – you can go to the doctor with a sore finger and they’ll chalk it up to […]
Deb feels that her physical looks led to assumptions.
Transcript
And the fact that the doctors were so rude to me. So utterly mean to me. They saw one or two tattoos on my body. They made assumptions. I didn’t smoke. I didn’t drink. I ran a 24-hour a day daycare for single moms that were on shift work. I […]
Doctors assumed that Dido's heart condition was related to her lifestyle.
Transcript
There were a lot of assumptions that I had been a heavy smoker. That I had been a drug user. That I had been a heavy drinker. That I had not been looking after myself. And that had not been the case. I found that really frustrating.
Amanda was told that her heart issue must have been caused by drug use.
Transcript
From the X-ray, the ER physician told me that ‘my goodness’, he said ‘Amanda, your heart is ginormous’. He’s like, ‘I’ve never seen a heart that big before’. And then he asked me – he blamed it first on taking elicit substances, so he asked me ‘Did you – by […]