Let’s do away with pity parties and start practicing self-compassion

If I could erase one term from the vocabulary of people affected by chronic or rare diseases like ANCA vasculitis, it would be “pity party,” closely followed by “sorry for myself.”

Those words are cruel. Not dramatic. Not motivating. Cruel.

When we say them to ourselves, we’re not being strong or realistic — we’re denying our own humanity. We’re dismissing the painful, lonely, exhausting reality of living in a body that doesn’t cooperate, of a life that has been permanently altered. This disease is hard. Some days, it flat-out sucks. That’s not weakness; that’s honesty.

To criticize ourselves for feeling that truth doesn’t make us resilient. It sets us up for more despair.

Recommended Reading

January 30, 2026 Columns by Sarah Jones

Living with chronic illness has taught me to hold on loosely

Feelings of sadness, overwhelm, anger, and grief are real. And many of the things that cause them are not fixable. There is no solution for the life you lost, the body you used to have, the future you imagined before vasculitis entered the room. When there’s nowhere for those feelings to go, they don’t disappear. They leak out sideways. They show up as irritability, withdrawal, numbness, and shame. Or they turn inward and tell us we’re failing at being sick “the right way.”

That’s not strength. That’s silence doing damage.

Making room for suffering

In a podcast interview with Tyler Cowen, author David Brooks said:

“There’s a Paul Tillich phrase that what suffering does is, it introduces you to yourself and reminds you you’re not the person you thought you were. And then he says, ‘What it does is, it carves through the floor of what you thought was the basement of your soul, and it reveals a cavity, and then carves through that floor and reveals a cavity below.'”

Anyone living with a rare disease knows this feeling. You think you’ve reached the bottom, and then the floor drops out again.

And here’s the hard truth: You can’t fill those cavities with positivity, gratitude lists, or telling yourself to “just push through.” Brooks said only spiritual food can fill those gaps. In other words: connection, meaning, honesty, and being fully human with other humans. “You have to stay in the pain long enough to see what it has to teach you,” Brooks said, referencing theologian Henri Nouwen, in a separate podcast with Kate Bowler.

That doesn’t mean drowning in it forever. It means not shaming yourself for being there in the first place.

There’s a difference between being broken and being broken open. Past philosophers have described how people broken by hardship often armor themselves, becoming invulnerable, calloused, closed off. But people who are broken open become more vulnerable, even in pain. They become capable of change. Growth doesn’t come from pretending we’re fine; it comes from rupture and repair.

And, yes, this applies to communities, too. Rare disease spaces don’t heal by silencing grief. They heal by making room for it.

Humanism tells us that dignity matters. That each person’s suffering counts. That justice includes believing people when they say, “This is hard,” without minimizing it or rushing them toward silver linings. Humanism is the antidote to nihilism because it insists that even in suffering, your experience has value — and so do you.

So, here is my hope for you:

When you catch yourself saying, “I’m just having a pity party,” stop. When you hear someone else say it — whether they live with this disease or love someone who does — gently interrupt it. Replace it with something truer: I’m hurting. This is heavy. This is a lot to carry.

Let yourself have the moment. Or the day. Or the week.

Because when you allow the feelings instead of shaming them, they move. They don’t get stuck. And on the other side of that honesty, you don’t come back weaker. You come back more real. More connected. And, in a way that actually matters, stronger than before.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.