When Your Values Get Sick, Too

How chronic illness reordered everything I thought mattered

Note: This piece contains reflections on chronic illness and grief around changing identities and abilities. If you’re in a tender place, be gentle with yourself as you read.

I absolutely hate the toxic positivity that surrounds illness in our culture.
Your pain doesn’t have to teach you something or make you stronger.
You don’t have to become an exceptional sick person.
You don’t have to inspire others.
You don’t have to have a good attitude.

All that said, living in a sick body has completely changed what matters most to me.

When your energy wanes and even washing your hair is a struggle, the things you spend your dwindling spoons on become increasingly important.

Frida Kahlo “The Broken Column” 1944

So I thought it’d be interesting to look at the values I had in 2018—written during a meeting with my friend who was a life coach—and see how they’ve shifted since becoming chronically ill.

My top 5 values in 2018 (along with my personal definitions then)

Accomplishment - Doing well at something based on my own measures. Putting in the work and time to become an expert.

Adventure - Challenging myself to try new things. A feeling of freedom. Travel.

Influence - Leaving my mark on the planet. Feeling like I’m making a difference. Expressing myself. Feeling important to others.

Self-expression - The ability to express myself fully. Tied to influence and accomplishment. The feeling of power and freedom.

Security - Managing risk. Feeling safe and stable. Financial stability. Knowing what’s coming next. Feeling like you can prepare. Being in control.

So I decided to revisit the same kind of exercise—listing out different values and ranking how important they feel to me today, from 1 (not important) to 5 (very important). It’s a simple reflection, but incredibly revealing.

First, where are my former top values?
Accomplishment has fallen to a 4.
Adventure has fallen to a 3.
Influence has fallen to a 2.
Self-expression is now a 4.
Security is a 4.

The values that feel most present now (and what they mean to me)

Helping Others
This is my reason for creating. My reason for continuing to put things out into the world. This feels like my most prominent value at the moment. In 2018 this was tied up in Influence, but as my world has shrunk from chronic illness I have less desire to “change the world” and more desire to make impact on individual people.
It’s the thing I get the most giddy about—when someone messages me to say they saw themselves in my work. My concern for equality is also part of why I want to help.

Health
When you can’t seem to make an impact on the health of your own body, the health of your mind and spirit become paramount.
Without peace and acceptance in my inner world, I was in turmoil from both sides, physically and mentally.
Lately, I’ve been learning to truly love myself without judgement.
To mother myself. To speak to myself with kindness.
These changes to my inner world are like a retaining wall, like the stable roots of a tree, and they’ve made my inability to control my outer world bearable.

Community
In the past few years, I’ve placed much more value on my relationships.
Being a better friend. A better daughter.
Living in a place that supports my lifestyle—moving to Porto from LA was part of that.
And I’ve felt so drawn to the beautiful community here on Substack. It’s become very important for me to nurture that and be present in it.

Creativity
This one feels like it’s taken over where Self-expression once stood.
Self-expression, to me, is more external. And that part can be stifled when you’re chronically ill.
I can’t physically do all I used to be able to, especially the expression I used to hold most dear, performing on stage or producing elaborate visuals.
But creativity feels inherent—part of the imagination, something that lives inside me no matter how sick I am.

Aesthetics
I hate that this word sounds frivolous, because I don’t see it that way.
For me, it’s tied to mindfulness. Gratitude. Presence. Awe.
Appreciating beauty is one of my greatest sources of joy.
It reminds me I’m small and interconnected with something larger. It puts my problems into context and makes them less overwhelming.

Final thoughts…

What’s most interesting to me is that now I’m actually living in alignment with these values.
Back in 2018, my values felt aspirational. I was chasing them.
Now, they feel integrated. Like I’ve chosen values that already fit who I am.

My past values also felt a little scary. They were stretching me a lot.
Maybe that’s just a phase-of-life thing. I was 30 and didn’t know who I was yet. I just knew I didn’t want to be myself. I wanted to be better.
My worth was deeply entangled in my work.
Now my worth is inherent.
I don’t need influence or accomplishment to feel worthy.

If you want to try your own version of this, you can search out a “core values” list to rate from, or you can simply jot down what matters most to you and see what patterns emerge. I’d love to hear what values feel most present in your life right now. What’s risen in importance? What’s fallen away?

Love,
vōx