Recently, in googling a link for my audiologist who has a friend with CFIDS and is still feeling the pressures of the disdain given to so many people with this illness, I ran across CFWarrier.blogspot.com. This is a blog by a young woman with the same illness I have, but who developed it in 2007 shortly after finishing her Ph.D. in Psychology and while working to get her hours of clinical supervision needed to apply for liscensing. Oddly, enough, her last name is the same as mine and as readers of my blog, know, Clinical Psychology was my profession, too. I was lucky enough to get in 16 years in my chosen work, to have many adult years of freedom, to travel, to sail before this illness took me down. Now it's grabbed her before she's even begun and as I read her blog, I see me in those pages, struggling to make sense of this monster, trying to find a doctor who might know a pittance about the illness and trying to avoid the ones who label you nuts and dismiss you.
Even though most of you reading this don't have CFIDS, I would recommend a visit to her pages. Her writing is sensitive and articulate. She's open. She's very bright. I liked her immediately when I first began reading her blog.
So many of my online cFIDS friends were hit by this illness much earlier than I was. One, still in her teens. Another, the first year into her marriage and plans for having children and going on with her career had to be scuttled.
Despite the toll this illness takes both neurologically and immunologically, despite its tremendous impact on our lives, it's still largely ignored by the general public. Laura Hildebrand, author of Sea Biscuit, has written a moving account of her struggles and helped tremendously in getting us a public voice. She wrote her book mostly in bed lying down with the room spinning, food in a small fridge she kept in her room for times she was too weak to go to the kitchen. She was denigrated, called 'lazy'. When the book was accepted, she had to face her fears of telling the publisher she wouldn't be able to tour. Her agent already knew. An arrangement was set up for telephone interviews instead, or interviews at her home. When finally she went public with the illness in a prize winning essay (which took her a year to write) and a feature on national television, two disc jockeys made fun of her afterwards (well, her illness). In the past, the shame would've hit her again, no matter how much she knew her illness was legitimate. This time, the act of going public, of becoming a role model and advocate for CFIDS sustained her. She was given the chance to speak for those who couldn't speak for themselves. She was able to shrug off their inane remarks.
I'm focusing on CFIDS because that's what I live with, but so many other people have had their lives rearranged by illness or disabilities. It takes changing your life view to come to terms with it. It takes courage. It takes a sense of humor. It takes the ability to say it's okay to grieve.