In preparation for a new book she's writing, Susan Bilheimer, author of Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships, is conducting a survey examining how medical professionals treat women with invisible illnesses.
Women with vulvodynia (and/or other chronic disorders) are invited to participate in the survey, which can be found athttp://www.surveymonkey.com/s/TDWVHDW.
I took this survey today and I encourage you all to do the same. Any information we contribute is important to promote awareness and new research. Taking the survey was a little difficult- I had to discuss my thoughts about invisible illness and how it makes me feel. I thought the question about if you purposely dress down and look disheveled for a doctor visit was extremely interesting. Because it happens. I've caught myself doing it before. Sometimes I just want to look sick because I'm tired of people telling me I look so healthy. To remind them that every day is a struggle. Doctors and specialists especially because I've been to the ones that do not believe me. I also like this list of what doctors could do to improve their treatment of women with chronic pain- but this list can be applied to anyone's expectations of medical treatment.
So, doctors, take note. We want you to -Take more time with us -Improve bedside manner -Select compassionate and patient staff -Know what questions to ask -Take our concern about pain more seriously -Validate our experience -Have a better understanding of the difference between acute and chronic pain -Be aware of medical knowledge about these conditions and treatment -Have the ability to send us to a network of specialists for different aspects of treatment (team approach) -Listen to, and believe us -Understand more about the difference between pain and suffering