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As a young woman living with chronic illness, I face challenges every day: fatigue, pain - and serious time constraints. (Must fit in that yoga class, and meditation, work, and a trip to the health food store, read the latest book on my condition, a little activism, and, oh yea, something fun maybe?)
But an even bigger challenge is ever-present: Speaking up about my health. As a good Southern girl, I was raised to be polite and not rock the boat. As an adult, that translated (until recently) into a timidity toward frank discussion of illness - especially my own.
That silence keeps millions of people from getting the care and support they need every day. Our health care system is broken, and while we may feel powerless to change it, we're not - but as a first step, we have to speak up about our needs and the injustices we experience.
I'm not the only person steeped in the stifling tradition of silence. As the owner of a web site about chronic illness (ChronicBabe.com), I often bump into other writers who are afraid to offer details of their illnesses. They're scared of the ramifications: Will people think I'm weak? A hypochondriac? Will my boss reduce my responsibilities? Am I less attractive if I'm sick?
Their fears aren't completely unjustified. Many people experience prejudice once they reveal an illness (especially an "invisible" one like fibromyalgia, chronic fatigue syndrome, chronic daily headache or multiple sclerosis).
I know this firsthand: When I was diagnosed with fibromyalgia at the age of 25, some friends, family members and co-workers were among the many people who treated me differently. Their lack of compassion and understanding made me feel like a whiner - like I was less of a person - and as a result, I stopped talking about my experience and asserting myself.
During doctor visits, I was afraid to question treatment plans that seemed off-the-mark. At parties, I was shy about asking for a seat even when my legs throbbed with pain. I would work long overtime hours even though my body cried out for rest. And for the most part, I kept my frustrations to myself. I felt incredibly alone.
It wasn't until years (and many doctors) later that I got comfortable talking about my situation. I started with little things like asking a friend for help with an errand, or telling a client I needed to schedule a meeting around my workout time. People would ask questions, and I would explain my illness. The more they listened, the more comfortable I felt. I learned to blow off the jerks who doubted or disrespected me.
Eventually, I assembled a close-knit group of friends and colleagues who really get me: I might be a sick chick, but I'm still a fun-loving, hard-working, creative Babe. A few of those folks encouraged me to write about my experiences, and ChronicBabe was born. Now I have the best job in the world, teaching young women how to live well in spite of chronic illness.
I'm not saying everyone has to start a web site and yack all day about the condition of their condition, but even taking the small step of being honest with a friend - getting your basic needs met - helps show people that it's okay to speak up. The more we do so, the easier it is for others to follow our lead.
Maybe I'm idealistic, but I believe that kind of open attitude can spread, gain momentum and become self-sustaining. If everyone tried speaking up, we could have an army of ChronicBabes (and ChronicDudes) initiating frank discussions about health care. Can insurance companies really turn a deaf ear toward millions of people who demand coverage? Can govermnent really ignore such a loud cry for help? Or is there a chance we could make universal health coverage and affordable prescriptions a reality? I think it's worth a shot. So speak up!