I write about leaving my teaching career and learning to live with a chronic illness and chronic pain
When I was first diagnosed, almost thirteen years ago, I felt relief. Finally, I had a name to explain the pain in my left leg. Finally, we knew why I could no longer walk, stand, sit, or simply feel as comfortable as I had in the past. UCTD, Undifferentiated Connective Tissue Disease, wasn’t fatal. It wasn’t even familiar, which I initially took as a good sign. If it was really bad, I surely would have heard of it before. Now I know that’s not necessarily true. My rheumatologist explained UCTD was an autoimmune disease, one that shares overlapping symptoms of rheumatoid arthritis, lupus, and myositis.
“It’s rare. If you want to walk around and call it ‘the Kennar’ you can,” he said.
I didn’t then. I don’t know.
I left that early morning appointment thinking everything was finally going to get better. It had taken almost a year and a half for me to get to that point. I drove to my elementary school classroom thinking UCTD would just be one more thing, one more detail, one additional side note in my medical file — along the lines of my asthma (which wasn’t a daily problem) and my allergy to penicillin.
I went to school that morning, stood before my fourth-grade class, and continued on with the lessons I had planned for the day. I would stop by CVS on my way home and pick up the prescriptions my doctor had called in. I felt confident these new pills would fix the problem because that’s what medication had always done up until that point in my life.
I could not have known that when it comes to a chronic illness, such as my autoimmune disease, there is no such thing as “fixing the problem.” There was no pretend magic wand I could wave and make things all better, like I did with my then-three-year-old son when he bumped into a corner of the coffee table. No one could kiss my left calf and make the hurt be “all-gone,” like a Mommy’s kisses often do for their little ones.
Leaving that appointment, I could not have known that within two years I would retire from my twelve-year teaching career due to a disability. I could not have known instead of being known as Mrs. Kennar, fourth-grade teacher, I would become Kennar, Wendy, a chronic illness patient.
For many, many years I actually spent a lot of energy trying to pretend that I was the same Wendy I had always been. My therapist was the one who pointed it out to me.
“You spend a lot of time and energy trying to act like you don’t have a disability. But you do,” she gently told me.
Living with an invisible illness has forced me to acknowledge my own earlier, ableist views. I’m embarrassed to admit I used to see drivers parking in a handicapped parking spot exit their car, seemingly looking “fine,” and judging them for being dishonest and lazy, using a parking spot they didn’t need. How little I knew. (I never confronted those drivers. I always kept my judgmental thoughts to myself.)
Likewise, living with an invisible illness has taught me that everyone is dealing with something. Everyone is walking around with scars and hurts, whether they’re easily seen or not. I do believe that living with my invisible disability has helped me to become more patient, more tolerant, and more likely to give someone the benefit of the doubt, because you never really know what someone is dealing with simply by looking at them.
At my core, I am a teacher. Now, I aspire to teach through my writing. Autoimmune diseases are confusing. Many of them are seemingly invisible, and much about them remains unknown. Through my writing, I can connect with others. This is not the life I would have chosen, but it is the life I am living, and I write about it to help give voice to others with shared experiences of living with invisible illnesses and chronic pain. As both a reader and a writer, I know there is such magic that happens when someone reads something and feels understood.
Check out my blog here: https://wendykennar.com/
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