We’re all taught that crying wolf is a bad thing, the story of the little boy serves as an example. The tale tells us that if we do it too often – no one will listen. What do we do when we cry wolf, but no one sees or hears? We didn’t cry too often, they just don’t want to understand or listen anymore. Every person with lupus or other chronic diseases knows this feeling. They live with the wolf, a disease that would steal their vitality and the hope of an ordinary life.
I have come to this piece by a short road of frustration, concern, and ultimately impotence. I know someone with lupus and her name is Sonya. She’s witty, stylish, Barbie doll beautiful, articulate, kind and so much more than the wolf that stalks her days and long nights. The wolf I speak of is lupus but really, it could be any chronic disease. Between 60-70% of mortalities occur due to this type of disease in the U.S. Sonya Dickerson is very much alive and fighting.
She’s fought shaking hands, crushing fatigue, unendurable pain and more in order to write, “Diary of a Sick Chick – A Year in the Life of a Chronically Ill Woman.” I would ask you to buy this book for two reasons (link below). It’s an insightful, valuable and at times funny story about a chronic condition, one of many that will affect every one of us, or someone we know at some point in our lives. It’s what you can do. The impotence I felt in relation to Sonya came from being able to do so little. I couldn’t take away her disease or ease her pain but I could buy her book and you can too.
Sonya has respect for this disease, so much so that she capitalises it throughout the book. Lupus: A clever disease that “has stumped the brightest minds of science and medicine. A systemic disease. A disease that attacks organs at will. Kidneys in one person, nervous system the next or even multi-organ failure.” In her case part of her symptom picture includes trigeminal neuralgia, otherwise known as the suicide disease. “The pain is unbearable. Excruciating. During an attack I either crawl around on the floor, engulfed in pain, or I pace…as if pacing will make a difference. Many people commit suicide when they run out of options. I can’t allow myself to go there. I have a wonderful child who I love dearly.”
We all have busy lives, raising children, working and supporting the people we care about. Sonya is doing all of this with lupus, writing, working and trying to raise a 14-year-old girl. I have a daughter of this age too and I’m quite impressed if she manages to make a meal for herself without setting fire to the kitchen. Sonya’s daughter not only cooks and cleans when her Mother can’t but recognises when it’s time to call 911, which has previously saved her Mother’s life.
“Diary of a Sick Chick,” details one year of ordinary life that is anything but, from diagnosis through to acceptance. It’s a journey that brings the author to a realisation that the chronically ill frighten people. They “fear that random things can happen to anyone.” People treat you differently and it becomes the litmus test for relationships, the ones that survive are special. “I’ve experienced people giving up on me. It’s like I’m already six feet under. The ignored and unreturned phone calls. The sad and pitiful looks. The downward glances. The yearning for yesterday when you were normal.”
The desire for normality is common ground between you and the people in your life. I believe in part, this may be the reason why some people shut down and avoid the chronically ill. It’s a kind of denial, not just from fear but also the abnormality of the situation. The same behavioural response can be observed in different animal species. They prey on, shun and drive out the ill or weak. If you are ill, you can literally become the disease, a lone wolf driven out of the pack. It’s not easy to feel normal when the landscape of your life is transformed, friends disappearing, choices narrowed and taken over by debilitating symptoms. “When you’re in pain, you can’t see, think or feel anything but IT.”
You would think that in our world of mass information, there would be less painful ignorance. With the overwhelming number of sites, blogs and resources available there should be greater understanding. I don’t think we’ve caught up with all that information though. In the medical sphere, where diagnosis and comprehension of disease is paramount, presenting as anything other than ‘normal’ (even disease has this designation) causes misdiagnosis, frustration, suffering and far worse. Consequently, there are people who remain undiagnosed, sent away with inappropriate medication in the hopes that it will silence the anomaly of their situation. “They don’t get a pink ribbon. They don’t get to walk for a cause. They simply go home and suffer.”
The path to diagnosis is frequently strewn with ignorance and dismissal. You become invalid, literally, and are made to feel as if you are ‘crying wolf.’ With the creativity of disease, so many people suffer unnecessarily simply for being outside the box. “You’re too ————- to have ——————. You’ll be fine. Take 10 mg. of fuckoffadryl for the next three days and that should do the trick. Those doctors don’t realise that you’ve lived in your body all your life and YOU are the expert on what doesn’t seem right or what does.”
This is just a little of what the chronically ill cope with. Sonya, despite feeling “as if she’s half a person instead of a whole,” has written a whole book that dispels some of the ignorance with courage and verve. So, this is what you can do; please re-blog this and buy her book. You’ll be helping her to help herself.
© S. Marian, Aug. 28. 2012
(Extracts taken from "Diary of a Sick Chick," click on the link for Amazon.com to buy the book. If you would like more information about Sonya, she also has a blog: http://supermodelrevealed.tumblr.com/)