Friday, October 8, 2010

Survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out

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

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 syndrome, 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

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).

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
* * *
For every patient who's been dissed or had physical symptoms ignored in favor of amateur psychology, let's give the medical profession an earful!

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