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Survey on Invisible Chronic Illness - Lesbian and bisexual women, and Trans people

We wanted to pass along this call for participants.  I wasn't aware of the acronym "ICI" for invisible chronic illnesses, but the experience of being disabled or living with a chronic illness or disability that isn't immediately apparent to others is one that is so far in the closet, in terms of most people's understanding of it, that any well thought out research would surely be a help in generating public discussion and awareness.  It reminded me of a fabulous post I read on FWD/Forward about Invisible Disability Bingo

Here's the call for participants, information about the researcher is at the bottom:

The purpose of this survey is to gather information regarding the challenges faced by lesbian, bisexual and queer women, and transgendered and transsexual people who live with invisible chronic illnesses.

You do not have to have a formal medical diagnosis to fill out this survey. However, you must have an invisible chronic physical condition. Invisible chronic illnesses (ICIs) share a number of characteristics regardless of diagnosis. Some of these characteristics are: non-observable symptoms (i.e. pain, fatigue, cognitive difficulty), some symptoms are immeasurable, sometimes people appear well, and the illness has periods of exacerbation and remission. There are many ICIs. A few examples are: multiple sclerosis, arthritis, HIV, fibromyalgia, lupus, and irritable bowel syndrome.

If you are not sure whether you are living with an ICI we still want to hear from you. Please fill out the survey. There will be room at the end for comments and you can let us know there why you are not sure.

You also must reside in Canada since the results of the survey will be used to advocate for change within the Canadian medical system and for community-based services. It does not matter whether you are a Canadian citizen, permanent resident, refugee claimant, temporary worker, or undocumented.  As well, you must be at least 18 years old.

This survey is anonymous. You are not requested to provide your name to participate.  Any identifying information you provide will be altered to ensure confidentiality.  Your privacy will be protected.

The results of this survey will be presented at the Rainbow Health Ontario 2010 Conference to raise awareness regarding ICIs and to start a conversation that will lead to change regarding the services needed for lesbian, bisexual, and queer women and trans people living with ICIs. To find out more about Rainbow Health Ontario go to:

Additionally, results from this survey may be used for publication to raise awareness and/or advocate for change.

The survey takes between 20 and 30 minutes to fill out. Here is the link:

The survey will be online until February 21, 2010.

About the researcher

The researcher is Silvana Bazet. This survey was designed by Silvana with the input of a Community Advisory Committee.  Silvana is a lesbian and lives with an undiagnosed ICI. She is also a psychotherapist in private practice and Clinical Member of the Ontario Society of Psychotherapists.  To find out more about Silvana go to:

Should you have any questions or comments, please contact Silvana at:

The survey is also available in Word to be printed and distributed to those who may not have access to a computer. Please contact Silvana to obtain a copy.


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