Women in Pain Second National Conference

By: Loolwa Khazzoom, Founder, Dancing with Pain

September 18th, 2009 • Patient AdvocacyPrint Print

The unstoppable Cynthia Toussaint.  Regal in her wheelchair, addressing an audience of 200 women in pain and their allies.  At a conference she organized.  Major media covering the event.  Cynthia telling her story of survival and defiance.  Inspiring.


After over a decade of being bedridden, after nearly taking her life from the ensuing despair, a simple change in health care — emphasis on care — enabled Cynthia to get out of bed and onto her feet in three and a half weeks.

I am angry.

So many stories inside of me.  So many experiences of taking my healthcare into my hands, fighting for my survival and healing, being met with roadblocks, antagonism, refusal of tests and treatments. Being blamed for a profit-driven, sickness-oriented system above and beyond my control.

Cyhthia reawakens the activist beaten down inside me. This is not about me. This is political. Letting a 20-something, vibrantly healthy and alive young woman crumple and become a shadow of herself is a crime. A system that supports that crime is a violent state.

Energy rushing through in such overwhelming quantities that I have to leave.  My body is too small to contain the emotions.  When will I tell my story.  When will it not be so charged that I have to stop every time I start. Will I forget the details in the meantime.  The details are where the truth lies.  Will I effectively erase my own story with the passing of time. Will I render my own self invisible, so that I no longer can connect the dots, so that I no longer can trace the crumbs back home.


JoAnne Schmidt March 12th, 2010

When I read these stories about others going through so much pain and suffering and fighting the medical system I just want to scream out “me too,” but  noone would hear me, just like noone hears me when I go to the doctor. It took forever for someone to finally say the word “Fibromyalgia!” I love your Blog! Keep on. . . . JoAnne

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