Life with chronic illness isn’t a new chapter; it’s a totally different book

No one teaches you how to be sick. There is no handbook for how to gracefully give up what you once perceived as power over your life and body in order to find peace with a chronic disease like ANCA vasculitis.

The world does not reward people who need help, or ask for help.

Vulnerability often evades us until we’re on the floor, gasping for air through tears and helplessness. I thought I understood vulnerability. I spoke openly, tried to live honestly, and believed that sharing my struggles was brave. And it was — until chronic illness arrived and rewrote the definition.

Recommended Reading

March 14, 2025 Columns by Sarah Jones

Adjusting to a brand new terrain after my EGPA diagnosis

Illness brings a kind of aloneness I never knew existed before getting sick. It’s a raw, bone-deep solitude. The version of me that once thrived on willpower, creativity, and connection seemed to be gone for the first three years after my diagnosis. The energy that once let me move freely through the world now feels like a memory. I still show up in my life — as a wife, friend, and daughter — but inside, I’m learning to find a new place to belong.

For a long time I felt like I was on the outside looking in. And that’s not poetic. Truth be told, it sucks. This story is about what that experience feels like and where I find myself today, four and a half years post-diagnosis.

Finding my way in life with vasculitis

Vasculitis, this vicious, invisible thief, has stripped away pieces of me. Independence. Confidence. Belonging. For years I felt terrified of the next medical appointment where I’d be reduced to lab results and notes in a chart. The real evidence, me, is invisible to the system.

I fake normal. I sit with friends, smile, nod, track half a conversation. Inside, my body screams. Fatigue, pain, and discomfort hum constantly, background noise I can’t silence. And I envy people who get to live without thinking so much about their bodies. People who don’t realize how much they have because they’ve never lost it.

My wife and I have been a fierce team for 30 years. But for the first few years after my diagnosis, we found ourselves on a brand-new path, suddenly living what felt at times like parallel lives. Her world had changed, too. We were tethered by love, but walking different paths. I was angry at what had been taken. Angry that even our connection, our togetherness, had been altered.

This illness has asked more of me than anything ever has. I feel like less in every role I’ve ever held: wife, sister, friend, human. But I’m being called to be more. To rise when I feel like disappearing. To speak my truth in exam rooms where I’m just a case number. To tell people I love when I hurt. To disappoint them by simply being honest about what I can’t do.

I’m finding my voice and learning — slowly, sometimes painfully — that I can’t will myself into wellness. I cannot push past the fatigue when it hits. It is real and must be honored. This survival is a kind of strength.

And I’m learning to wait. To sit with the stillness. To trust that the wind will blow again, eventually, even if I have no idea when or how. I can’t force it. I can’t rush it. I can only be here and trust. My wife and I are finding new ways to connect and enjoy life that are compatible with my new limitations.

There are times I still hate this; don’t get me wrong. But this is my life now. Not a different chapter, but a whole new book. And as I learn to make friends with it, honor the hard times, and bathe in the moments of joy and peace, I am somehow learning to live with it. Not because it’s OK, but because I matter. Because I’m still here. And that, for now, is enough.

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.