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Survey gives patients with "invisible" illnesses a chance to speak out about how they are treated

Thursday 7 October 2010

SurveyFrom PRLog:

Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out About How They Are Treated

Patients who suffer with chronic fatigue, fibromyalgia, pelvic pain, TMJ, migraines, chemical sensitivities, and more can speak out in an anonymous survey about how the medical community treats them.


PRLog (Press Release) – Oct 02, 2010 – Patients with "invisible" illnesses, such as chronic fatigue, fibromyalgia, vulvodynia, interstitial cystitis, migraine, irritable bowel syndrome, chronic pelvic pain, and a host of other pain and inflammatory disorders have tremendous difficulty finding the help and treatment they need; even finding a diagnosis is a challenge. Doctors often dismiss their symptoms as being imaginary, which further demoralizes an already suffering patient.

Now, as part of the research for a new book on how the medical community treats patients with "invisible" illnesses, patients  can express their feelings and speak out through an anonymous patient survey. All respondents will receive a downloadable pain trigger journal.

According to Susan Bilheimer, author and survey creator, "It's time that the medical community recognized that patients with illnesses that are chronic and not easily diagnosed are not problem patients, but patients with a problem. Just because you can't see pain and inflammation doesn't mean they aren't real. There are certainly exceptional doctors who understand chronic illness. But for those who don't, I'm hoping to send a wake-up call that it's no longer acceptable to dismiss and mistreat suffering patients."

So far, over 1,100 responses have been received. A number of organizations, such as the National Vulvodynia Association ( and the Interstitial Cystitis Association (, have encouraged their members to take part.

To take the survey, go to

This survey is associated with the Invisible Illness Advocate ( and Secret Suffering ( websites (Susan Bilheimer, founder, and Robert J. Echenberg, MD, medical advisor).
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About Susan Bilheimer: Susan Bilheimer is a writer, radio host, and speaker on women's health issues. She is the co-author of "Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships" with Robert J. Echenberg, MD. Her own journey with perimenopause, pelvic pain, and invisible illnesses led to development of websites and books to educate and empower patients. For more information, go to or

The above originally appeared here.



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