Thursday, February 1, 2018

The doctor stood at the foot of my hospital bed. After fourteen long days in the hospital I had a diagnosis. He said, “You have lupus. Do you know what that is?” I had no idea. I mumbled something about knowing a lady with lupus. She was tired a lot and had to stay out of the sun. I felt…nothing at all. I was numb. I couldn’t rally a single brain cell to ask a coherent question.

A friend gave me a book, Lupus: The First Year. The book sat, unopened and face down on the table for a month. I could not bring myself to look at the cover much less read anything. I had questions. I wanted to know but was simultaneously terrified to know what my life would be like going forward. By the time I saw the doctor again, I had three burning questions. Will this kill me? Is it progressive? Will I lose my independence? His answer was the same for every question. “We don’t know.”

Chronic illnesses are often unpredictable. Symptoms may come and go. Often, these illnesses take years to diagnose. When we finally have a diagnosis, we think, “Now that there is a name for what’s wrong with me, we can fix it.” But the relief of having a name for what’s wrong fades as we learn that there are seldom answers to our own burning questions.

Fifteen years later, I posted an infographic on my Facebook page. “29 out of 100 patients will die from complications of lupus.” A newly diagnosed person saw that infographic. She berated me for scaring her with that post. I would have been scared too. Ignoring the facts won’t make them go away. You have a chronic illness. Whether you know about it or not, you still have a chronic illness. But in the end, knowing is better than not knowing. Because I know my risks, I can take action to mitigate those risks. You can too.

Even if I am afraid, I will continue to learn about my chronic illness.
(c) Linda Ruescher 2018

From Life Recycled: Creating a New Normal in the Face of Chronic Illness. Release on April 1, 2018.

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