The Stories of Chronic Disease

I am in the habit of sharing my online experience with anyone who might happen to visit this blog.

I offer up this oldie by goodie; "Scope " a blog filled with medical news from the Stanford School of Medicine. The blog has current information on nutrition, ethics, healthcare, infectious disease, cancer, medicine and research. I have integrated a bit of Scope into my morning ritual; first a nice cup of coffee, then off to an interesting and pleasurable blog experience.

Today's contributor at Scope is Michelle Brandt who writes on the topic of rare disease, including a link into the world of chronic illness. A world that anyone living with chronic HCV is all too familiar with.

In Ms. Brandt's words; "An estimated 25-30 million Americans have a rare disease, defined by the National Institutes of Health as a condition affecting fewer than 200,000 persons. I happen to be a member of this most unfortunate club (I was diagnosed with a rare blood disorder a decade ago), so I took notice yesterday when the company Inspire posted a compilation of narratives (.pdf) written by other patients living with chronic illness" I hope you take a quick glance at Ms. Brandt's complete entry

I followed her suggestion and soon became engrossed in each personal account of the pain, frustration, and valuable wisdom experienced only by people who live with a disease that evolves into a chronic illness. That's the key, isn't it ? First the diagnosis, a disease, no cure, chronic, forever. This serious diagnosis can only be processed in stages, with the latter taking on a life of its own.

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When diagnosed the patient's shock can lead to a delayed understanding of the gravity of the diagnosis. While still straining against the weight of heavy news being heaped upon their shoulders the patient encounters the added severity of the word chronic. The patient has just been slammed twice with one diagnosis, although not simultaneously. The term "Chronic" takes its time to wriggle into mind of the patient. It starts as just a word, it's a dull blade slowly being sharpened. The patient heard: disease...no cure... They soon realize that "chronic" means illness forever.

Unfortunately chronic illness is most often endured alone in the body and mind of the patient. It's human nature to try not to disturb or upset the balance in the lives of those we love. They often suffer in silence as not to interfere with those living outside their world. Yes, initially family and friends are supportive, but as time passes the disease becomes the norm. The outside world becomes immune to the daily struggles of living with a chronic illness. The scars are not as apparent, in some cases invisible, as with some forms of chronic disease.

However, what emerges from the pain is the wisdom only won in the face of adversity, the chronic illness takes its rightful place in the rhythm of life. Sometimes the reality of chronic disease becomes mundane. The unnoticed heroes continue their triumph over life's challenges all the while quietly carrying their illness along with them. Until the day comes when the patient must come to embrace dependence on family and friends.

Please visit the linked site which is appropriately named; "Inspire".