At some point, many of us have had to change a thread in a story we tell ourselves about ourselves. Sometimes that thread is part of a major story in our life. What’s lost and what’s gained in the process? In my life pre-illness, I saw myself as an “overachieving doer.” Almost overnight, I had to revise that definition.

The illness came on with bone-deep pain in my hips, unrelenting exhaustion, and sudden problems with word-finding. When writing or typing, I also began to subtly reverse letters within words and words within sentences. As an English major and writer, these last symptoms had me most confused. My memory became unreliable, though I was too young to have “memory problems.” I would do things like turn on a coffeemaker and forget to put the pot underneath the drip.

Some patients with my dozens of symptoms met only disbelief from Western medicine. I was lucky. I was soon diagnosed with chronic fatigue syndrome (CFS; now sometimes referred to as myalgic encephalomyelitis or M.E.). Two MDs, in separate practices, agreed on the diagnosis. One referred to my confusion in writing and speaking as “quasi-dyslexia.” I also came to know that cognitive disconnect as “brain fog.” Initially, I was relieved to have a diagnosis. But suddenly, I was defined by something that many others discounted as “not real.” At the same time that I lost my livelihood and sense of self in the world, I also lost some friends.

One “close friend” didn’t bother to listen to the information I had gleaned about the little-understood illness. He wrote it off as a stress response. Years later, I realized that this denial had historical roots. In the 17th and 18th centuries, many physical health issues – in women especially – were lumped under “nervous disorders.” And in the Middle Ages, people with what we today recognize as mental health problems could be categorized as witches or possessed by demons. One gain of going through the illness was that I learned who my true friends were. They were the ones who provided me moral support through two decades of creating a new way of living.

During illness, I turned to writing. It was both a sanity saver and helped me to further develop a skill that had been important in my prior life but not its main focus. That life had been a public one and more than a bit fragmented. But writing was solitary, private, and balanced – a gain for my body, mind, and spirit. And it was something I could put away when symptoms worsened. I was inspired by the work of Laura Hillenbrand, author of Seabiscuit and Unbroken. She has managed to write award-winning books in spite of a debilitating case of CFS/M.E. (Hilton, 2014)

I began to heal from the worst of it at around the 15 year point – again, I was lucky. I’m now about 80% back to my previous functioning, though not “cured.” I can easily be knocked into a flare by doing too much. One fact of this new life is that I need to view my body as a finely tuned biofeedback device. Sore throat? Heightened brain fog? Low grade fever? Dizziness or Alice in Wonderland syndrome? Those symptoms and more continue to signal when I push too hard. They tell me to rein-in my efforts and enthusiasm.

Each of us likely carries a physical or emotional challenge – or maybe both. For an example of an emotional challenge, see neuropsychologist Dr. Diane Engelman’s post, Costs and Benefits of Being a “Worry Wart.”

Revising our stories to reflect unexpected events can challenge us:

• We need to acknowledge that the losses are real.
• We may grieve for what was.
• We may worry about the future.
• We may struggle to see any gain in the revised story.

But if we work to shape our thoughts as well as our behavior, if we look for what is possible as opposed to what is impossible, then I believe the gains ultimately outweigh the losses. At least, that’s what happened for me.

Sources:
Hilton, Wil S., NY Times, 12/21/14 “The Unbreakable Laura Hillenbrand”

Note: In this post, the author, JB Allyn, is not directly or indirectly giving psychological or medical advice. Nor is she prescribing the use of any technique to treat medical, physical, or emotional problems. The author intends only to offer information of a general nature that may assist you in seeking personal growth. If you choose to use any of the information the author presents, she assumes no responsibility for your choices or actions.

Tagged Alice in Wonderland syndrome, brain fog, CFS, chronic fatigue syndrome, dyslexia, Laura Hillenbrand, M.E., memory problems, myalgic encephalomyelitis, Seabiscuit, worry