03 / Fierce Compassion

What If Resilience Isn’t the Goal?

By Emily Tissot

This week, I was asked to write about resilience. Little does my poor editor know, they just cracked open a can of Four Loko—because this article is about to dive into the world of semantics, empowerment, and a touch of chaos.

You see, dear reader, the word resilience stalked me, mocked me, and lived in my head for three years during public health grad school. It was the “sexy” word to describe communities in crisis, people rising up against injustice, and individuals navigating impossible circumstances. We studied it, debated its elements, measured it, and—worst of all—used it to rank people.

Example: This group is “highly resilient” because they achieved an ROI of X after Y disaster, but this other person only qualifies as “moderately resilient” because they didn’t make a full comeback from the brink.

Later, when I went through a period of personal crisis—one that truly demanded resilience—I found myself measuring myself using those same frameworks. Was I bouncing back fast enough? Was my income recovering? Was I attending social events again? I gathered data on myself like a little academic gremlin, desperate to prove I was “resilient enough.”

That’s when I realized: resilience, for all its well-meaning intent, had become tainted. It had picked up the residue of judgment. And frankly, I was not in a place to be judged.

Maybe you feel differently. Semantics is an art, not a science—and your experiences will shape how this lands. But if you resonate at all with what I’m saying, I’d like to offer an alternative: fierce compassion.

Instead of striving to be resilient, I want to be fiercely compassionate—with myself and with others. Compassion isn’t something you can measure or plot on a graph. No MBA will ever knock on my door and assign a monetary value to it—and that’s exactly why I chose it.

So, what does fierce compassion look like in real life? For me, it means:

• Talking honestly with loved ones about how I feel.

• Accepting that it’s okay to feel negative emotions.

• Creating goals when I can, and letting them go when I can’t.

• Reminding myself that I am worthy, even on the days I feel completely undone.

And when I don’t show up with fierce compassion?

• I ignore my limitations.

• I lose track of time and myself.

• I disconnect.

• I spiral into depression, anxiety, and self-doubt.

A few weeks ago, I was at dinner with friends. One of them has long COVID, along with other complex health issues, and her illness has shaped our friendship. That night, she began sharing another update—another flare, another setback. One of our friends rolled her eyes.

(To be fair, yes, that’s a harsh response. But also—yes, we had heard these stories before. Chronic illness can be repetitive. That doesn’t make it any less real.)

My friend caught the eye roll. She paused, looked our mutual friend in the eyes, and said calmly:

“Telling you these stories is how I destigmatize my illness, come to terms with my future, and build a support network. If you don’t want to be part of that, you don’t have to be.”

Queen. Jaws dropped. Apologies flew. She had fierce compassion for herself in that moment, and she drew a line, inviting others to meet her there.

For those of us in the rare disease community, this kind of self-advocacy isn’t optional. It’s survival. We're expected to be resilient—to power through, to bounce back, to inspire. But what we really need is space to be heard, held, and believed. Resilience might be admirable. But compassion—especially the fierce kind—is essential.

Thank you for listening. Stay compassionate. Stay real. And whatever you do—stay you.

📊 Life Beyond the Chart

An activity worth doing: Going outside for a walk is an activity that's always worth doing. What's key is adapting it to whatever your capacity is at the time. It might turn out to be anything from going around the block to taking a long walk at a local park. What matters is getting outside in the fresh air, maybe with a friend or loved one, and letting the simplicity of it calm and ground you.

A boundary worth setting: It's important to understand your mission and purpose in life. This helps in setting boundaries around the projects that receive your time and energy. When your goals are defined and in front of you, it will be clear when you need to say "no" to an ask. This makes room for serving your purpose and giving an enthusiastic "yes" to the projects that ignite your passions.

A question worth asking your healthcare provider: "What are my options?" This question comes in handy for a variety of reasons. If a drug isn't covered by insurance, there could be a less expensive alternative. If a treatment is causing side effects, there may be a way to mitigate them. Asking this question helps bring shared decision-making into the discussion, so that you are aware of all the options and are empowered to choose the one that's best for you.

A mindset shift worth making: It's not personal. Most people are worried about themselves, and are not saying or doing things to cause harm or hurt on purpose. Knowing that the actions of others are about them, not you, frees you from expectations, anxiety, and upset.

A simple meal worth preparing on low-energy days: It's important to have a simple recipe at the ready for a low-energy or high-pain day. A kitchen appliance that can help is a slow cooker, crock pot, or instant pot. Find a recipe that works for your needs and is no more difficult than putting ingredients in the pot and turning it on. Prioritize having the ingredients on hand at all times, so they should ideally either be shelf-stable or frozen. On a difficult day, this recipe should be as simple as putting the ingredients in the pot and turning it on. That way, you have a hot meal, with ingredients that support your health, which only dirties one pot, and may even feed you for more than one day.

— Sponsor —