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by Sharon Dale Stone

Putting hemorrhagic stroke under a gender lens

Thanks to public awareness campaigns in recent years, most people have heard of stroke and have at least a vague awareness that stroke can kill or permanently disable, but this tends to be the extent of their knowledge. Few are aware that even though seniors are more likely than young people to have a stroke, it can and does happen to people of all ages.

Although it is difficult to gather accurate statistics, available Canadian evidence shows that approximately 30% of strokes occur in people under the age of 65, 3-4% occur in people 40 or younger, and when a young person has a stroke, it is quite likely to be hemorrhagic.

Approximately 20% of all strokes are hemorrhagic, but that rate jumps to more than 50% of strokes in people under the age of 50 -- with women more likely than men to experience a hemorrhagic stroke.

There are rehabilitation professionals who can help, but not everyone has access to their services. Indeed, in my personal experience of surviving hemorrhagic stroke in childhood, and in my study of 27 women survivors of hemorrhagic stroke in Canada, the United States and the United Kingdom, I have found that, regardless of country, few women get the help that they need.

Young women – the group most likely to experience hemorrhagic stroke – are mostly being left to deal with the consequences as best they can.

There has been little gendered analysis of hemorrhagic stroke, and as a result, the experiences of girls and women are often overlooked.  In researching my book, A Change of Plans: Women’s Stories of Hemorrhagic Stroke (Sumach, 2007), I intentionally focused on the post-stroke experiences of women who were disabled by a hemorrhagic stroke between the ages of 8 and 49. My research was designed to highlight women’s experiences in particular, in opposition to the usual state of affairs when discussing stroke, which subsumes women’s and girls’ experiences under those of men.

Inadequate diagnosis for young women

Hemorrhagic stroke is caused by bleeding in the brain, and this is often, though not always, caused by a ruptured aneurysm -- a weak spot in a blood-vessel wall -- or arteriovenous malformation (AVM) -- essentially a tangle of blood vessels. There is no way to accurately predict whether or when an aneurysm or AVM will rupture, but evidence indicates that an AVM is likely to rupture within the first four decades of life.

Diagnosing a hemorrhagic stroke is not necessarily a straightforward process because symptoms can vary significantly. Typically, someone who has had one will experience an excruciating headache, will vomit, lose control of one side of the body and lose consciousness, although not all of these symptoms are always present.

Even when these classic signs are present, however, there is growing evidence that when women first seek medical attention, misdiagnosis is relatively common – it can happen as often as 50% of the time.

In my own research, for example, I found women who, even though they presented with classic signs, were initially dismissed as suffering “women’s problems,” stress, migraine headache, drug overdose, the flu, and incredibly, one woman was diagnosed as having pulled muscles, while another was said to have a urinary tract infection.

The role played by age in misdiagnosis is not clear, but it seems likely that this may happen more often to young women because even medical professionals do not always anticipate that stroke can and does happen to those who are not elderly. Like the general public, they too can diagnose based on stereotypical assumptions.

And the young women themselves, who experience stroke, often seek many other explanations first for their symptoms. Several women told me how surprised they were to be diagnosed as having had a stroke. Jan (all names are pseudonyms), for instance, who knew more than most about stroke commented:

I said to [my husband], “I think I've had a stroke. I can't have had a stroke, can I?  I'm only 37.” 'Cause at that age I just -- at that stage I just had no idea that young people had strokes.  I thought you had to be sort of 65 plus and they were brought on by blood pressure problems.

Living through the consequences of hemorrhagic stroke

For the most part, the consequences of hemorrhagic stroke are invisible to onlookers. I would venture to say that the general invisibility of consequences greatly contributes toward the profound public silence that exists surrounding the possibility of having a hemorrhagic stroke in childhood or before the arrival of old age. That is, we survivors often appear to be completely able-bodied, and so others do not see evidence of young people who have had a stroke.

While the mostly invisible consequences of stroke mean that survivors may not be immediately stigmatized as disabled, it also represents a major problem because it often means that survivors do not get the treatment that they both need and deserve.

The consequences of hemorrhagic stroke depend on where in the brain the bleed was located, how much bleeding there was and how long the bleeding lasted. Without prompt and appropriate medical attention, the consequences are virtually guaranteed to be catastrophic. However, even prompt and appropriate medical attention cannot always prevent impairments that significantly interfere with someone’s ability to negotiate daily life in the way that they did before the stroke.

Common consequences include cognitive impairments (especially difficulties with memory and/or aphasia — a type of language impairment), motor impairments (especially one-sided weakness or paralysis that can make it difficult or impossible to perform tasks requiring fine motor skills), difficulties with maintaining balance (so that it would be difficult or impossible to walk a straight line), impaired senses (especially vision, but touch and smell are also commonly affected) and susceptibility to overwhelming fatigue (so that it becomes difficult or impossible to function). As well, those who survive a ruptured aneurysm or AVM are often left with epilepsy.

Under-treatment: The invisible legacy of hemorrhagic stroke

In selecting participants for my research, I purposefully excluded women who have been left with impairments so severe that they need ongoing assistance with personal care activities. My sample, instead, was made up of women from a variety of racial and ethnic backgrounds, living in a variety of social and economic circumstances. They live with impairments that are not visible to others, and some of these women are also visibly disabled, in that they walk with a pronounced limp or use an assistive device to aid mobility.

All of them became disabled more than three years prior to being interviewed, and some became disabled more than 30 years previously. Amongst these women I found numerous commonalities and differences, particularly in how survivors are treated by medical and rehabilitation professionals.

Based on my own experiences as a survivor, as well as on the experiences of women I have interviewed, it is clear that, regardless of difficulties we may have in negotiating daily life with invisible impairments, there seem to be few people who are prepared to take them seriously. This was one of the more common experiences for the women I interviewed. Cindy, for example, expressed her frustration:

Because I don't walk with a stick, because I'm able to speak, and because I'm intelligent and therefore can articulate most of what I want to say, so when I say I have problems with language, people say, “Well, you can speak fine.” “No, I can't.” I know I can't do what I used to be able to do. It's like banging your head against a wall, that. 'Cause, yes, people don't recognize that I've got problems.

Although Cindy came to realize that she had significant cognitive difficulties as a result of her stroke, it took her years to get a proper diagnosis and then appropriate help. No professional suggested to her during her immediate post-stroke recovery that her cognitive abilities might have been affected.

Indeed, virtually all of the women I interviewed recognized that they were not as cognitively quick as they were before the stroke, but few of them were ever diagnosed or offered appropriate help in coping with cognitive impairments. Medical professionals seemed to be doing what the general public tends to do: focusing on what is most obvious and ignoring the rest. It is too easy to discount what cannot be seen, and my interviews are filled with examples of the harmful consequences of this tendency.

Certainly, there needs to be more awareness of the possibility of cognitive impairment following hemorrhagic stroke. Yet, it is equally important that this awareness is coupled with an appreciation for the uniqueness of each individual, so that everyone also remains open to the possibilities for incremental change and improvement in skills.

There is a tremendous silence surrounding the invisible, yet disabling consequences that frequently accompany hemorrhagic stroke, and this silence needs to be broken. The silence means that when we survivors experience difficulties, we are likely to blame ourselves for what we perceive as personal shortcomings, rather than seek help and support. This may be a particularly salient issue for women, since women generally are often given to engaging in self-blame regarding abilities.

Tragically, the absence of medical attention to helping women become aware of and cope with the typically invisible consequences of hemorrhagic stroke can contribute towards a survivor’s decision to commit suicide. Obviously, it is not possible to know how many women have committed suicide because they feel unable to cope; yet, it is telling that two of the 27 women I interviewed made serious attempts at suicide, one was seriously depressed when I interviewed her, and several others talked about contemplating suicide, mostly on account of being unable to cope with the expectations of others. These are the consequences of the resounding silence that surrounds the subject of hemorrhagic stroke before old age.

Some of the material in this article is published in A Change of Plans: Women’s Stories of Hemorrhagic Stroke (Sumach Press, 2007) by Sharon Dale Stone, available at: www.sumachpress.com.

Sharon Dale Stone is Associate Professor and Chair of the Department of Sociology at Lakehead University, where she is also affiliated with the Women’s Studies, Masters of Public Health, and Gerontology programs. Her research focuses on experiences of living with chronic impairments.