Patient Power Collective: Issue 01

Showing Up Imperfectly Well

By Adrienne Farrell

I used to think courage looked like having it all together. I’d watch people move through the world with such ease—their homes spotless, their careers on track, their smiles unforced—and assume I was the only one who ever woke up exhausted before the day began. The only one whose kitchen table was half workspace, half laundry pile. The only one who sometimes faked confidence while quietly wondering if I belonged in the room at all.

Then one ordinary Tuesday, a friend texted me: “Can we cancel our plans? I just don’t have it in me today.” Not an elaborate excuse. No performative guilt. Just a simple, human admission. And in that moment, something in me loosened. Her honesty felt like permission to be tired, to be struggling, to not always be okay.

This is the paradox Marianne Williamson names when she writes: “As we let our own light shine, we unconsciously give other people permission to do the same.” But here’s what we often miss—that light isn’t some dazzling, flawless brilliance. It’s the glow of realness. The way a candle flickers honestly in the dark instead of pretending to be a spotlight.

I’ve come to believe that every time we show up as our true, imperfect selves—whether that means admitting we’re overwhelmed, showing our half-finished projects, or simply saying “I don’t know”—we’re doing sacred work. We’re dismantling the myth that everyone else has it figured out. We’re creating little pockets of oxygen in a world that often feels airless with expectations.

There’s a quiet power in this. When you let your guard down first, you give the people around you space to do the same. The colleague who hears you say “I messed that up” breathes easier about their own mistakes. The friend who sees you cry feels less alone in their grief. The stranger who notices you struggling with your groceries and your toddler might — just might — stop judging themselves so harshly for their own chaotic moments.

This isn’t about glorifying struggle. It’s about refusing to let perfectionism steal our humanity. Some days, showing up might mean leading a shorter meeting. Other days, it might mean canceling plans to care for yourself. Both count. Both matter.

The truth is this: We’re all walking each other home. And the most precious gift we can offer isn’t a perfect performance—it’s the reassurance that none of us are walking alone. So go ahead. Show up in your messy, glorious imperfection today. Someone out there is waiting for permission to do the same.

💹 Life Beyond the Chart

A video worth watching: 
Change, Not Charity: The Americans with Disabilities Act by American Experience on PBS. You can watch it on YouTube for free. It is a fantastic look back on the passage of the Americans with Disabilities Act (ADA). It is always important to look back in history and learn about the individuals who worked so hard to get the ADA passed so that we as disabled individuals now can continue to strive towards greater accessibility and inclusion.

A book worth reading: 
How to Live Well with Chronic Pain and Illness by Toni Bernhard. This book was extremely helpful to me when my chronic illnesses started to significantly impact my life in a way they had not before. It is full of fantastic information on how to live mindfully with chronic illness. It is packed with great quotes and ways to become more compassionate towards yourself.

A self-care practice worth adopting:
Vegging without guilt. Sometimes it can be so difficult as a person with multiple chronic illnesses to just rest without feeling guilty. I constantly feel that if I am resting, I am not contributing to society in a productive way. But I also know that rest is so critically important for me! I know many of us feel guilty when we rest. Giving up that guilt and just letting yourself sink into your bed reading a good book, watching your favorite TV show, or listening to a podcast is critical and we are worthy of rest. Our value does not rest on us being productive all the time. I have to remind myself of this often.

A community worth joining: 
I’ve been so lucky to have found the patient advocacy community. I recommend everyone to find your advocacy community for your health condition. It is so nice to volunteer with others who can relate to what I am going through. It is empowering to be able to do something in this crazy world where it seems all decisions about our healthcare is being made by others. I’ve met so many amazing people and become friends with so many through advocacy. And I’ve been able to do it all online! Sometimes when you have a diagnosis it can feel really isolating, and support groups are a great option for many, but I encourage you to take it a step further and volunteer doing advocacy as it brings another dimension of togetherness with your patient community, and you get to enact change for the better.

A simple meal worth preparing on low-energy days:
When I have low-energy I’m not going for fancy or super tasty, I’m just trying to find semi- healthy calories. I normally will make a rice, chicken, pea, and carrot dish. I take a cup of rice, add a little more than two cups of chicken broth (with added protein), a large can of canned chicken (like the ones from Costco), a cup of frozen peas and carrots, a little bit of onion powder, garlic powder, chicken bouillon, and pepper. Place everything in one pot, bring to a boil, reduce to simmer, and cook covered for about 25 minutes. Turn off the heat and let sit, covered for 10 more minutes. Then serve. Sometimes I’ll add toasted small bits of pasta, if I want a little more variety. I use this all the time as I have gastroparesis and need low-fat, low-fiber meals. While not the best texture, it works and it’s calories. It also freezes and reheats just fine.