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4 Things You Can Do When Chronic Illness Leaves You Feeling Lost


As a 4-year-old girl, I once peed my pants while hiding inside a circular rounder of clothing at our local Walmart store. Having been somehow separated from my mom for what felt like an eternity, I’d become increasingly afraid of all the unknowns around me. Everything felt foreign, menacing, and overwhelming. As time passed, the idea that I had been cut off from my mom for all eternity cemented in my mind. In the end, I cocooned myself within the nearest rounder of clothing, shaking with terror. My sobs must have alerted someone to my presence, because just as my fear peaked and I released my bladder onto the floor, the clothes parted, and the face of an elderly Walmart employee appeared. Queue ultimate humiliation.

While I felt sheer relief upon being reunited with my mom, she felt a different combination of emotions. It turns out learning your daughter peed on the Walmart floor doesn’t emit instant jubilation.

The thing is, I felt lost, alone, and afraid. So I hid. (And peed.)

My mom didn’t understand this response. Still today, many of us are living out the same cycles. Chronic illness often leaves us feeling lost, alone, and afraid. So we hide. (And maybe some of us pee. I have bladder issues, so it’s a possibility.) People don’t understand this response and get frustrated with us. Thus, a cycle ensues, and communication breaks down.

So, if hiding and peeing isn’t the answer? What is? What should we do when chronic illness leaves us feeling lost, alone, and confused?

1. Reach Out: When our instinct is to turn inwards, it takes bravery and intentionality to reach out. However, we’ll never stop feeling alone if we don’t take those intentional steps to connect to others. These steps can be small and based on what our health will allow. This may include online groups, book clubs, sharing, opening up about ourselves and our struggles, finding people with common interest, waving at our neighbor, etc.

2. Self-CareSelf-care looks different for everyone. For me, when the world feels too big and I feel too small, I need quiet time with a book, writing time with my laptop, or time with a friend watching shows in our comfies. I try to refrain from hiding in rounders of clothes these days, but strolling through Target is still oddly soothing to me.

3. Talk It Out: Whoever those trusted people in your life are, this is the time to borrow their ear. Now is when we say the words, “I feel so lost.” Or, “I haven’t seen anyone other than a pharmacist or doctor in a month. I feel like no one cares about me. I need you to tell me that my life matters.” Our lives do matter, but everyone needs a reminder every once in a while.

4. Help Others: In whatever way your body will allow, make the world better. Is knitting your jam? Can you make blankets and donate them to homeless shelters? I promise, as you do it, you will begin to find your footing again. Maybe, if I’d found another little girl looking for her mom that day at the store and helped her, it wouldn’t have been so scary. I bet we would’ve started playing ponies and forgot all about the part where we were supposed to be hunting for our moms.

Feeling lost, alone, and afraid is terrible, no matter how old you are. How terrible it is, depends on whether or not we know what to do when we find ourselves there. That day, after my mom and I were reunited (and I helped clean up the pee) she said, “ The next time you can’t find me…” Getting separated from her was never so scary after that because I knew what to do.

The next time chronic illness leaves us feeling lost, alone, and confused, let’s remind ourselves we know what to do.

A version of this post first appeared at Counting My Spoons.

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