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Q: How is it possible to become settled into a body that is no longer cooperating? A year ago COVID completely changed everything I had learned about my body over the 48 years I’ve inhabited it, and with that I feel unmoored, and wondered if you had any advice to get my bearings.
A: First, I want to say I feel for you and what you’re going through. A barrage of feelings surface when our bodies feel newly unsafe, when they stop resonating as homes and start feeling more like tents in a hurricane.
In 2010 I was diagnosed with chronic Lyme Disease after many years of an illness no one knew how to treat. There are few things I remember in more exacting detail than the day my symptoms first came on. I was so lost. So terrified. So desperate to return to the reliable body I once had. The body that could dance until 3am and then ease through ten hours of work the next day. The body I never had to think about.
I was recently talking with my doctor about how many long haul COVID symptoms resemble those of chronic Lyme. They are also similar in the fact that many people still deny their existence. “No such thing as chronic Lyme.” “No such thing as long haul COVID.” You and I know that isn’t true, and I hope you have people around who believe and buoy you. And if you don’t have that on the home front, online groups can help shuck away the loneliness.
Just last night I was texting with my friend Sarah who has chronic illness, and who has been far more courageous than myself when it comes to talking about health publicly. She recently posted these words to instagram:
“It’s hard for able bodied people to understand sometimes, how a chronically ill person can operate under the duress of pain that would render an abled person unable to function. On the flip side, when we are unable to do anything—or as much—we get questions too. Perhaps they aren't always out-loud, but they’re there.”
I encourage you to follow her page as it’s very comforting to hear someone refuse to hide what living with a chronic condition feels like. What she shares helps me understand my own experience better, and reminds me to be gentle with myself.
You ask about becoming settled into your body in its current condition. It took me a while to learn how to accept the new state of my body while simultaneously working to heal it. Though it seemed counterintuitive at the time, acceptance was a needed first step in my healing. I had initially thought the opposite. Thought accepting my new body meant not trying to improve how I felt. I was wrong.
My friend Carolyn has a chronic illness and she’s been a mentor to me when it comes to perspective. When I was very sick I told her I felt like my body was my enemy, and she responded by saying she had the exact opposite experience. When Carolyn’s harder symptoms flare, she immediately recognizes them as her body fighting hard to keep her alive. I consciously work to do this now as it helps me reframe my pain as my body fighting for my survival, and it may help you to try that out for a while.
One final thought I’ll share—My partner has ADHD, and though I worked to understand it, there were many ways I failed to really get what she was going through prior to my recent cancer treatment. Chemo changed the way my brain functioned for a while. So did the surgery, as it sent me into overnight menopause and my brain was suddenly a very different brain without estrogen. I say this to tell you that with cancer and Lyme, many gifts have come in the form of increased capacity for understanding others. In my hardest moments I lean on this. When my symptoms feel close to pummeling me, I can often find comfort in knowing I’m becoming more empathetic in the process.
Thank you so much for your question. I found it very healing to ponder, and I hope some of what I’ve shared can be a bridge toward softer days.
Love, Andrea 🖤
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