VASCULITIS the autoimmune disease that deceives vasculitis.net.au

Homepage

2
A Strange and Mysterious Disease

3
Miscommunication
– Talking About a Different
Disease

4
Ignorance
– Consultation or Interrogation

5
Frustration
– Treating Parts of Us,
Not Us

6
Self Interest - Neglecting the
Patient

7
Corruption
– No-one Is Responsible

8
Absurdity
– We Can Do Better

9
Patient Participation -
From Theory to Practice

10
Change - Feminist and Patrirchal medicine

APPENDIX 1
Sent Home Suffering
Septicaemia - POSTSCRIPT

APPENDIX 2
Fatigue

APPENDIX 3
Patriarchal Medicine
Taken to Extremes

 

HOMEPAGE - Argument for Change

We are not just patients; while we live we need a sense of some control over our lives including some say in our treatment.

This site argues for change in the way medical providers treat vasculitis (and autoimmune disease generally).

Remember the situation with abortion in the 1960’s? The medical profession didn't even acknowledge it existed.

No type of doctor, specialty, clinic or discipline (that was legal) was responsible. Patients were treated in private clinics, but many missed out. Some ended up dead, their bodies found weighted down in Port Phillip Bay.

Vasculitis has been called a strange and mysterious disease. It can have a mortality rate of 98% in 2 years. Symptoms may come and go without a trace. It is systemic, affecting every part of the body.

Yet here, too, there is no type of doctor, specialty, clinic or discipline that is responsible. And because people think that a disease has a specialty or department or type of doctor to treat it, people with can be seen as lying, either bludging or malingering.

In our culture we don't look kindly on bludgers or malingerers. They can be refused sick leave. They can be sacked. If they are already unemployed they can have their dole cut.

They can wrongly lose custody in divorce proceedings - as in the case where the deciding factor was that the father would come home and find his wife asleep on the
couch and the children running amok. It was used as evidence for neglect.

Once you have that label your motives for anything you do or don't do are judged in a negative light.

Even if you suffer major organ damage and are clearly legitimately sick, it is the organ that is sick and your 'genuine' symptoms must relate to that organ. But major organ damage is what treatment for vasculitis aims to prevent!

Medical providers say they treat vasculitis to prevent organ damage, but they also say they can't treat vasculitis without evidence of organ damage. This is absurd.

I believe one reason for this contradiction is that the treatment for vasculitis involves the use of drugs that are cumulative and can be deadly.

This brings up questions that are as much to do with belief systems and the law as they are to do with medicine, so it concerns us - as feminists, patients and members of our community.

We can't just leave this to the medical establishment.

To be responsible for our own health and lives we need sufficient information to make sense out of what is happening to us. We also need some degree of control over what is done to us.

We need our medical providers to communicate with us sufficiently for us to make sense of what is happening to us so we can organise our lives accordingly.

We also need this so we can explain it to employers, social security, family, friends and colleagues.

We need to be able to participate in the decisions made about our treatment.

We are not just patients; while we live we need a sense of some control over our lives including some say in our treatment. In theory we have this, too, but in practice I have been ignored, silenced and sometimes misled.  

2. A Strange and Mysterious Disease

(Please let us know at Womensweb if this site is helpful to you, or if not, how we can develop it: wmnsweb@iprimus.com.au )

In memory of my mother, a patient of a Rheumatology Clinic for forty years; and in memory of those who suffered for want of appropriate treatment . 

For their support and encouragement, I am grateful to Frances Gaston, Tony Rimmer, and the women from Women in Black, Melbourne Australia.
Thank you all.

Published by Women’s Web – Women’s Stories, Women’s Actions
http://www.womensweb.com.au
wmnsweb@iprimus.com.au
and on VICNET, State Library of Victoria, http://home.vicnet.net.au/~vasculitis

As long as you are using this copyright material for social justice or personal purposes please use it to your benefit - but remember to acknowledge the source

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Changes We Would Like to See:

HOLISTIC TREATMENT
We need treatment from a doctor, a specialty, or discipline that covers vasculitis as a whole as well as from the specialists who presently treat us.

AUTOIMMUNOLOGISTS
We need information and support from a source other than the specialists who presently treat us.

PATIENT PARTICIPATION 
We need some way to enforce in practice what we already have in theory - that the patients to be offered clear, understandable information, the opportunity to ask questions and to participate in decisions about their treatment.

- We need this so a person has somewhere to go for information about diseases and disorders such as vasculitis generally;

- We need it so doctors have somewhere to go if they suspect vasculitis in their patient;

- We need it so vasculitis is seen by the community as a legitimate disease;

- We need it so that someone, somewhere, may be held accountable for the way vasculitis is treated.

In conclusion, the patriarchal and directive treatment we presently receive is necessary but inadequate. We also need treatment that is FEMINIST and COLLABORATIVE.