Acceptance is an ongoing practice in life with chronic illness

If you live with ANCA vasculitis, you’ve probably heard the word “acceptance” more than once.

It’s a word that can feel loaded and even frustrating. When people suggest acceptance, it can sound like they’re asking us to like what has happened, to stop fighting, or to quietly surrender to the disease. That is not what acceptance means.

In fact, I believe it’s healthy that we don’t like this disease. ANCA vasculitis is disruptive, frightening, and often painful. It changes our bodies, our routines, and sometimes our plans for the future. Feeling anger, grief, or resistance to that is a completely human response.

Acceptance doesn’t mean approving of what has happened to us. It means coming to terms with reality so that we can live inside it.

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One of the hardest part of vasculitis is that it isn’t outside of us, nor is it like a broken bone we can set and move on from. It lives inside our immune system. It moves through our blood vessels, affecting organs, energy levels, and sometimes the rhythms of our daily lives.

Many of us try for a long time to treat the disease as an enemy we must defeat at all costs. That instinct makes sense. We want our old lives back. We want our bodies to behave the way they once did.

Truth be told, you cannot go to war with something that lives in your own body without becoming a casualty yourself. The disease isn’t something to be defeated and expelled. It is woven into our biology, our daily rhythms, our decisions, and our relationships. Treating it as an adversary to be conquered keeps us in a state of permanent battle, which is exhausting, demoralizing, and ultimately, unwinnable.

Acceptance is not giving up that fight for proper treatment, a better quality of life, care, or research. It doesn’t mean we have to be OK with a treatment plan if we still feel bad and feel as if we have no life. We can still talk with our doctors and tell them we want better.

Acceptance is about choosing a different relationship with the reality we live in, instead of spending all our energy wishing our reality were different. It means recognizing that this is part of our life now and asking: How do I live well within this life? That shift takes courage.

Real acceptance isn’t passive. It’s active, deliberate, and often very brave. It requires us to learn about the disease, build medical teams, listen to our bodies, adjust expectations, and sometimes redesign parts of our lives.

It means allowing ourselves to grieve what has changed while still choosing to move forward.

It also means acknowledging that vasculitis doesn’t only affect our bodies. It touches our relationships, our work, our sense of identity, and the way we think about the future. Learning to live with this “unwanted guest” requires patience with ourselves and with the people around us.

And acceptance is not a single moment but something we return to again and again. Some days, it feels easier. Other days — during flares, setbacks, or exhaustion — it can feel almost impossible. That is normal.

Acceptance is not a finish line. It is a practice.

Over time, many of us discover that when we stop fighting the fact that the disease exists, we free up energy to focus on living our lives in meaningful ways. We can direct our strength toward healing, connection, advocacy, and the things that still bring us joy.

We may never welcome vasculitis into our lives, but we can learn how to live alongside it without letting it define everything about who we are.

And that, in its own quiet way, is an act of remarkable courage.

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.