Wysocki (1998) 'But Women Can't Have 'Hemophilia'!: A
Look at the Lives of Women with Bleeding Disorder'
Sociological Research Online, vol. 3, no. 4, <http://www.socresonline.org.uk/3/4/3.html>
To cite articles published in Sociological Research Online, please reference the above information and include paragraph numbers if necessary
Received: 06/08/98 Accepted: 18/12/98 Published: 31/12/98
'We wish to plead our own cause. Too long have others
spoken for us.'
Cited in White, 1994.
Written in 1827 by the founders of Freedom's Journal, the first black American newspaper
it has been shown time and again that human beings who are given power over other human beings will abuse it. Physicians, unfortunately have created for themselves an inappropriate societal role and status that includes a high degree of power and authority....Doctors live in their own subculture, which reinforces their self-image as totally honest, well-meaning, caring, and special members of society. Many doctors regularly abuse women as a result of underlying prejudice and self-deception. They have concluded honestly, though mistakenly, that they occupy a special niche that should be unchallenged, and that they possess a valid body of knowledge that allows them to treat without harm. Doctors who do unnecessary operations on women almost always genuinely believe that they are acting in the best interest of the women. (Smith, 1992:18-19)
women suffer most severely because they are at the hands of a specialty that is dominated by males, acting and thinking like males, and an entire system of medical research and treatment that is shaped by males.
women are neither complacent about nor pleased with the obstetrical and gynecological care. They are insulted by paternalistic physicians who expect them to act like happy, obedient children. The loss of reproductive organs is more likely to be a cause for mourning than rejoicing, and birth is sometimes experienced as a depressing rather than a joyous event. From this perspective, the happy specialty is a contradiction in terms created by male practitioners who, because they cannot experience the problems they treat, tend to trivialize or misinterpret the significance these problems hold for women (Scully, 1980: p. 93)
the most common bleeding disorder in the United States von Willebrand's disease may be the underlying cause of menorrhagia in about 9 to 11% of all womenŠamong adolescent girls who are going through menarche, coagulopathies have been found to account for a much higher percentage - 45% (Lusher, 1995: p. 30).
physicians focus[ed] so much on the obstetric and gynecologic causes of abnormal bleeding, they often neglect[ed] to test their patients for von Willebrand's diseaseŠ.[which] leads them to treat the condition inappropriately (Lusher, 1995).
know what brought on the bleedingŠ..I had a lot of bad bloody noses very early on. Once when I was less than 5 years old I was take to the hospital where I was 'packed' [with gauze to stop the bleeding] (Respondent #3)
We had a graduation party at my house and I scratched a scab or a small spot and it bled through and ran down my face when I removed the skin and it squirted like a hose. I put ice on it but it wouldn't stop. One and a half hours later still bleeding. I called the doctor and went to the emergency room. He couldn't believe a small hole would bleed like that. He used a shaving pencil) but that didn't work- he applied pressure for 10 minutes and it stopped but when I started to leave it started again. He used a shot of something she didn't know) it caused a large white ring on my forehead and it stopped bleeding. That was really Strange!! (Respondent #32)
had a car wreck and had a lot of pain and bruising in my arm. We knew I was a carrier [of hemophilia] but until that time had had no internal bleeding problems (Respondent #2)
trauma [that] was induced when I caught my wrists and arm in a security gate. [I] sustained cracked wrist bone and three deep tissue bleeds on [my] arm and shoulder (Respondent #78).
very heavy, had much spotting in between, had huge clots, and anemia alsoŠ.. one period = 1 box super plus tampons, 2 boxes Kotex Overnights, 4-5 Depend undergarments (Respondent #133)
I had strict teachers who wouldn't allow me to use the rest room during class. I would change my pad before a class started, but by the time the hour was up, I would already have soaked through to my outer clothes. My mom was always home and she would bring me new clothes to change into. Unfortunately my parents didn't talk to the teachers. I had a hard time walking home from the bus stop too. There were a few times that I didn't make it home before I soaked my clothes. It was very embarrassing. I would say I had an episode like one of these at least once a month for 2 years.
I feel I have missed out on a lot. I have always had to plan all events around my monthly cycle. Although the final decision was mine, I resent the fact that I had to have the hysterectomy before ever having children (Respondent #133)
made contact with 4 hematologists/oncologist...and asked them if they would give their female patients your survey, I know these doctors......and I knew somewhat how they would react......so far only one was interested, the others are making excuses.....like no time, not of interest, I was even told if the woman is having problem she should join a support group and they will provide this info for them even though he knows there is no support group..........I guess you could write all day about how women are not heard. I suppose we could blame managed care because the doctors do. To my surprise even the female doctors treat us the same as the males (personal e- mail 11/96)
at this point in my life I just want my questions answered. I want an accurate diagnosis so I may get an accurate treatment program. I don't have any more time to argue with doctors, nurses, etc.
2Dr. von Willebrand originally called this disease pseudohemophilia or false hemophilia.
3To find out more about this BB contact - Hemophilia-Support-Approval@Web-Depot.COM.
4 It is important to keep in mind that all of my respondents have somehow become aware of their bleeding disorders and have become connected to other women or groups. This study does not represent all women in the general population who have a bleeding disorders, but have not been diagnosed.
5Women who reported they bled this long, reported they had only a few days between their menstrual cycles.
6It is important to keep in mind, that most of these women didn't know they had a bleeding disorder. So, many thought them thought that the birth control pills would just help control their bleeding. When they wanted to get pregnant they stopped the pills. Pregnancy, just like the birth control, raises the estrogen level which is what sometimes can raise the factor levels that will increase clotting. If the woman nurses her baby, that also tends to keep the estrogen level up. This doesn't always control bleeding however.
7 This is a blood clot that causes vein inflammation which may interfere with circulation of the area, and it may break off and travel through the blood stream thus it may lodge in the brain, lungs, heart, or other area, causing severe damage to that organ. For more information on this you may refer to http://www.healthanswers.com/database/ami/converted/000156.html or http://www.healthanswers.com/database/ami/converted/001108.html
8The other researchers tend to be nurses or doctors looking at the medical aspects of this disease. Their work is very different from my research which is grounded in a feminist sociological standpoint. Regardless, what we are finding, when we compare notes, is that our different modes of research can go together nicely to help us all learn more about women living with this disease.
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