What a difference a day makes with a rare disease

We’ve all heard the phrase “what a difference a day makes.” That couldn’t be more accurate for someone with vasculitis or any other chronic disease. Some days can feel as if they last for weeks or months, or never seem to end. Other days fly by in a minute.

For a person who tends toward positivity, seeing opportunity at every turn, I’ve had a rough time honoring the bad days. But it’s an important part of the process. Otherwise, I’m sending myself the message that the bad days are my fault, that I’m wrong or a failure, and that they’re something I should push past or get over.

Instead, I need to recognize that the bad days are just part of the process. Rare disease is hard enough without us “should-ing” all over ourselves, telling ourselves what we “should” feel instead of just feeling it.

Since my diagnosis of eosinophilic granulomatosis with polyangiitis (EGPA), I’ve come to believe that we need to honor both the good and the bad days. That’s counterintuitive to American culture, which is often hyperfocused on achievement, productivity, and happiness. The truth is that bad days are normal. We all have them, both people with a disease and those without. It’s important not to pretend the bad days don’t happen and to make the most of the good days.

It sounds easy, but in reality, the very process of honoring the space we’re in takes work and courage.

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Honoring the bad days

The rare disease community is a courageous bunch. And there’s research that helps us understand the emotional toll of illness. Part of what we do when we honor and share the bad days (relapse is real) and the good days is that we let people we love into our truth. We soften the emotional toll. If they only see and hear about the good days, they don’t truly have an understanding of the disease.

Educating them about our disease, in fact, keeps us from feeling isolated. We’re also allowing ourselves to continue to take up space in this world, even when we’re not at our best. We’re telling ourselves that we’re OK just as we are.

Here is my bad day story:

I’ve given it everything I have. I’ve taken all of my meds religiously, except for the days when my cognition challenges result in missing a dose or taking night meds in the morning. I’ve sought out the best doctors for my disease, firing (or ghosting) ones that wouldn’t listen to me or honor my health realities. Yet none of these efforts bring endless reprieve from the realities of my EGPA and the many side issues it brings.

The past few weeks have brought daily fevers, shortness of breath, bone-level fatigue, and nausea. I’m glad to know now that it’s my EGPA, but I’m sick of it. Today I’m just exhausted by it and resent the time it takes from my life.

And tomorrow is another day. What a difference a day makes.

For those of us with a rare disease, no two days are alike. And it’s important to share the good and the bad. Because that’s how we share all of who we are.

What is your bad day story? Can you end it with “And tomorrow is another day. What a difference a day makes”?

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.