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How I Manage the Fear and Uncertainty of Living With Chronic Illness

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I have been dreading this day. I have known for a year that it would arrive, and I feel like it has been chasing me day in and day out. My days have been filled with anxiety, and my nights have been consumed with unease.

I began short-term medical leave 12 months ago for erythromelalgia (EM). This rare disease causes burning in my toes, feet and legs. Wearing socks and shoes is impossible. So is walking, standing for extended periods and sitting for prolonged stretches. Because I am unable to perform these basic functions, I needed to take a leave of absence from my second grade teaching position.

During the past year I have done everything I could to reduce the pain level and increase my ability to function. I have tried multiple medications, undergone a spinal cord stimulator trial, and visited a physician who is a leading expert in dealing with my disease.

Meanwhile, I have been lying on the couch watching television, listening to audio books and scrolling through social media. During this time, I have suffered countless anxiety attacks triggered by the pain itself. But fear has caused many of them: Fear of another pain flare. Fear of another anxiety attack. Fear of never feeling pain-free again. Fear of how my illness affects my family. Fear that the pain will lead to an early death. Fear of becoming addicted to my medications. 

However, the fear of never working again consumes me. I love the teaching profession, my students and my colleagues. The income is not much, but helping children learn how to read, write and solve math problems brings a profound joy. Sometimes, the thought of losing all of that is more than I can bear. 

I take medication to deal with the panic attacks and therapy is helping me not to catastrophize. I meditate, pray and find support from my loved ones. Still, I know there is no cure for my chronic illness, and I have no idea where this will lead.

Throughout the past year, I have been telling myself, “If you never go back to work, your life will be no different than it is right now.” And that’s true. I have not spent any time in the classroom since last year, but making the decision to go on permanent disability is not something I felt ready to do.

My contract runs through the end of the school year, so I thought I would not have to commit to returning until then. I was wrong.

The state’s public employees’ benefits agency sent me a letter informing me that they have decided to place me on permanent disability, and I have six weeks to decide whether or not to accept their offer.

Even though I knew this day would eventually arrive, its sudden appearance is causing me more fear. Fear of never again practicing the profession I love. Fear of losing contact with my friends and colleagues. Fear of financial insecurity. Fear of not knowing what to do next with my life.

No one has any real certainty in life. Anything can happen to anyone at any time. So I have come to realize that the best way for me to deal with my fears is to acknowledge and even welcome them.

I may never overcome all of the fears related to my chronic illness, but denying them would be living a lie. I have found that welcoming my fear allows it to speak its truth and listening to what it says enables me to make more deliberate decisions about my present and what may (or may not) happen tomorrow.

Header image via Rawpixel/Getty Images.

Originally published: February 17, 2019
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