But What Does It Look Like?

smiley-2979107_1920Image by Gino Crescoli from Pixabay

The illnesses I have been blessed with are the autoimmune conditions Celiac Disease and Hashimoto’s Thyroiditis, as well as recurring viral and bacterial infections and a heavy toxic load. These conditions contribute to frequent episodes of chronic fatigue and flu-like symptoms. I place them all under the umbrella of chronic illness.

I imagine it must be hard for the healthy to fully comprehend what it means to be chronically ill. The term may conjure up images of lazy people lolling about in bed, eating bonbons and watching daytime television. It could just seem like an excuse to get out of dealing with the hard work of life. This couldn’t be further from the truth. Those of us with chronic illness work desperately hard just to get through each day and to contribute to the life of our family, friends and coworkers. Its symptoms vary from one person to the next. During an acute flare this is what it looks like for me: I wake feeling exhausted no matter how many hours of sleep I have had; my whole body aches; my skin is tender to the touch; my throat hurts; I have a dull, throbbing headache; my head feels like it’s stuffed full of cotton, and I have a hard time organizing my thoughts (everything is fuzzy); my muscles are weak; there appear to be 10 lb. weights hanging from each leg; I have zero stamina. Sometimes I can handle the physical symptoms with stoicism and a zen outlook. At other times I feel hopeless and find a place to cry where my kids won’t see me. Trying to make the best of chronic illness is important. But it’s just as important to recognize and accept that it sometimes feels intolerable. I always allow myself to feel whatever I’m feeling in the moment: If I find myself in a dark hole of depression I will let it all out until I feel cleansed. Releasing (rather than suppressing) my negative emotions helps me avoid becoming bitter and resentful and allows me to return to a state of hopefulness. I believe that hope is healing.

One of the sneaky aspects of chronic illness is that some people experience periods of remission during which symptoms abate. There are days, weeks, and sometimes even months when you will find me hiking the gorgeous hills of Mt. Tam, taking yoga classes, filling my schedule with clients, having dance parties with my kids, and playing energetically with our dog. This can be hard for people to wrap their heads around. My family and closest friends have witnessed the ebbs and flows for long enough to understand that a good spell is just that: a spell. It will last as long as it lasts. Casual friends and acquaintances tend to assume that I’m “cured”, and strangers who interact with me during these periods have a hard time believing that I’m chronically ill at all. While it can be frustrating trying to explain to others that these periods of wellness don’t mean I’m healed, each time I experience one it gives me hope that someday I might achieve permanent remission.

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