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Dysautonomia Is Going To Be My Senior Thesis--At Least I'll Get Something Out Of This Disease!


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So, i am one quarter away from graduating with my undergrad, one quarter! And finally, one of my professors has gotten back to me about finishing some incomplete coursework. This is my senior capstone class in communications and the topic is stigma. I have chosen to write about the stigma of women and illness in the medical field--specifically the reception of women patients by doctors and medical professionals. I know everyone here has had experience with this and was wondering if i could get some leads from anyone on here as to peer-reviewed journal articles regarding this. Additionally, any opinions on the stigma that people with our disease get from their doc's would be helpful. This includes negative stigmatizations or conversations that you have experienced with your docs regarding your healthcare.

Note: i thought about posting this in off-topic, but i think stigma is a big part of dysautonomia and that the stories would be better shared in the dysautonomia forum.

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I went to the ER very sick and feeling like I was going to die. It was my second ER visit in two days. My son told me, "Mom, he thinks you're crazy." The doc wanted to send me home with compression socks. I stood arguing with him that I was too sick to drive two hours one way home. As I stood arguing with him he watched my feet turn bright purple and when he noticed how high my heart rate had skyrocketed he told me to lie down. When I did he saw my right leg tremors! He rushed off to consult with a cardiologist and came back and said he was admitting me. A tilt-table confirmed... POTS. But on my release papers he wrote if further cardiac testing failed to find anything he recommended a full psychiatric examination for somatization disorder. Somatizing???? This after he saw with his OWN EYES my purple feet, high heart rate standing, and right leg tremors AND he read the tilt-table which confirmed POTS!!!! Somatizing?

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Rather than look at this from the victims point of view,

I'd be interested in how medical professionals got the idea that patients, esp women, aren't to be respected.

I can understand not trusting a patient who shows up asking for pain meds on a regular basis,

but not respecting patients as a rule doesn't make sense.

So is the stigma being taught by med schools, social circles, or is it inherit in the "caring" environment ?

We see this same disrespect from some carers and most social classes ...

Good luck on your thesis. Tc.. D

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I believe there is simply a stigma/prejudice against women in medicine, both as patients and as doctors. This is a centuries old, perhaps milennia old problem because of the differences in men and women. You can find bias in treatment for everything from migraine to chest pain to mental illness. Good luck with your thesis!

J Community Health Nurs. 2006 Fall;23(3):159-67.

Ambiguous chronic illness in women: community health nursing concern.

Johnson JE, Johnson KE.

Source

School of Nursing, New Mexico State University, Las Cruces, NM 88033, USA.

Abstract

The purpose of this study was to explore how women with ambiguous chronic illness, such as celiac disease and interstitial cystitis, cope with the difficulty of being diagnosed and the subsequent realities of daily life. A convenience sample of 15 women with chronic ambiguous illness in 4 geographic areas was interviewed via qualitative methods. Data were analyzed using conceptual coding and constant comparative methods. These categories were identified: persistence in obtaining a correct diagnosis, trivialization and stigmatization, embarrassment, being an inconvenience, and ways of coping. Women were misdiagnosed for years (R = 2 to 11) and felt dismissed as being depressed or hysterical. Yet, they emphasized that persistence in obtaining a correct diagnosis is essential even though it may mean suffering embarrassment and inconvenience. Suggestions for community health nurses to improve the lives of women with ambiguous chronic illness are offered. PMID: 16863401 [PubMed - indexed for MEDLINE]

Gend Med. 2011 Dec;8(6):378-87.

Women underrepresented on editorial boards of 60 major medical journals.

Amrein K, Langmann A, Fahrleitner-Pammer A, Pieber TR, Zollner-Schwetz I.

Source

Division of Endocrinology and Metabolism, Department of Internal Medicine, Medical University of Graz, Graz, Austria. karin.amrein@medunigraz.at

Abstract

BACKGROUND:

Although there has been a continuous increase in the number of women working in the field of medicine, women rarely reach the highest academic positions as full professors or editorial board members.

OBJECTIVE:

We aimed to determine the proportion of women on the editorial boards of top-ranked medical journals in different medical specialties.

METHODS:

We analyzed the gender of editorial board members of 60 top-ranked journals of 12 Thomson Reuters Web of Knowledge Journal Citation Reports categories. A total of 4175 editors were included in our analysis.

RESULTS:

Only 15.9% (10 of 63) editors-in-chief were female. In the 5 categories, critical care, anesthesiology, orthopedics, ophthalmology and radiology, nuclear medicine and medical imaging, currently not 1 woman holds the position of editor-in-chief. Less than one fifth (17.5%, 719 of 4112) of all editorial board members were women. There were significant differences among the evaluated categories, with the highest percentage of women in the category of medicine, general and internal and the lowest in the category critical care, followed by orthopedics. In every category, the proportion of women as editorial board members was substantially lower than that of men.

CONCLUSIONS:

Women are underrepresented on the editorial boards of major medical journals, although there is a great variability among the journals and categories analyzed. If more women are nominated to serve on editorial boards, they will be a visible sign of continuing progress and serve as important role models for young women contemplating a career in academic medicine.

Copyright © 2011 Elsevier HS Journals, Inc. All rights reserved. PMID: 22153882 [PubMed - indexed for MEDLINE]

Edited by firewatcher
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Great topic for a paper! Good luck with it. I think the obvious big thing is how women are often dismissed as suffering from a psychological problem, rather than physical - and how this can delay a proper diagnosis. I think it's even worse in our case because many of us are young, therefore should not be sick and also, so many of the symptoms look like anxiety.

A few news and scientific articles on how women with heart attack symptoms are treated differently than men by Dr's or at ER's - and a couple of other things.

http://well.blogs.nytimes.com/2008/10/13/just-stress-more-often-diagnosed-in-women/

http://abclocal.go.com/kabc/story?section=news/health/your_health&id=8416664

http://www.ncbi.nlm.nih.gov/pubmed/17984470

http://www.ncbi.nlm.nih.gov/pubmed/10770981

http://www.ncbi.nlm.nih.gov/pubmed/17110507

http://www.abc.net.au/rampup/articles/2011/11/21/3372006.htm

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It took me more than 10 years to get diagnosed. When I first got sick I went to doctor after doctor. One told me that I had depression. One told me I was a "hypochondriac". A third sent me for a drug test ( street drugs). As a young woman in my twenties I was very poorly treated by doctors and nurses.

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This also brings to mind the hearings on Capitol Hill over the winter on women's reproductive issues. It was heard in front of an all-male panel. Without getting political, it shows a very basic bias & naiveté.

My personal experience has been a lot like kayjay's. It took me 5 years to get a diagnosis of POTS and many eye rolls from Drs who just wanted to dx me with depression & anxiety. I had to fight to get answers on my own, until I finally landed in the right Dr office. I am so thankful I found that Dr - otherwise I might still be just treating "depression" today!!

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