What holding on to hope looks like in life with vasculitis

I remember the early days of my vasculitis diagnosis, when high dosages of steroids and chemotherapy robbed me of joy. My physical self was suffering to the extent that my mind and spirit broke with it. For several months, I woke up in the morning and had to sit on the edge of the bed for a good length of time, talking myself into getting up and starting my day.

I was 17 years old.

Though this cloud of fatigue and depression settled over me at first, I fought my way through it with every tool I could gather. By the end of a year of treatment, I’d managed to balance this new lifestyle and find a way to move forward. I went to college, began a career, moved across the country a few times, and adopted rescue pets.

None of this would have been possible if I didn’t have hope that I’d eventually resurface from the darkest days of my illness.

Hope. It’s an abstract concept, but brimming with meaning. It’s almost as if the four letters are ringed with sparkles and accompanied by music in a major key. Hope is a common touch point of humanity, the subject of art and literature, the propeller of modern romantic comedy storylines.

But how does it translate to those of us with chronic disease? Definitely nothing like in a rom-com.

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Holding on to hope

For vasculitis patients, hope can take various forms. We might wake up and cross our fingers that we have a day without too much pain or fatigue. Or perhaps we’re waiting to hear good news from our physician. Regardless of what stage of vasculitis we inhabit, it comes with an undercurrent of hope that our disease will continue on an upward arc so we can live better.

Of course, there’s always the anticipation of a cure. But since that hasn’t yet materialized in modern medicine, we can at least set our sights on remission. Medical technology moves quickly: There are procedures in place nowadays that we were unaware of when I was diagnosed in 2005.

I can extrapolate that and imagine that it must get significantly better with each passing decade. After all, an improved quality of life is the best outcome, regardless of where any patient is at in their diagnosis.

There has to be a silver lining. A pot of gold at the end of the rainbow. Sunshine after the rain. Insert whatever platitude you like, but we can’t lose hope that our situation will improve.

I’ve been a bookworm for as long as I can remember, and now I’m a writer. Naturally, I love words and their meanings — even how they change over time. It turns out that “hope” began as another word for “expectation,” “confidence,” or “trust.” If someone “hoped” something would come to be (such as the way Jane Austen’s characters spoke), they fully anticipated it happening.

Similarly, someone once described hope to me using an acronym: “Having Only Positive Expectations.” I liked that as a catchy way to reframe my thinking. It’s preferable to the 50% chance of the outcome being good, as the word implies today.

Hope intertwined with relentless positivity can be exhausting, and we have to stay realistic about the details of this disease. But without something to look forward to, we can get stuck in a rut.

Some people use family or social events as hopeful landmarks, like a chance to visit with the grandkids. Road trips, vacations, and other unusual travels give us hope that we’ll experience a change of scenery and clear our heads. On my worst days, I consider simplicities like a gourmet coffee or a friend’s hug to be worth waking up for.

Patients may hope for a clean bill of health, no active inflammation, a lower dosage of medication — touchstones that we use to tell ourselves that the energy we put into our health isn’t spent in vain.

Hope is what compels us to move forward. In a lifestyle where things can turn on a dime and leave us feeling helpless, it’s imperative to find reasons to keep going despite health challenges.

Here’s to continuing forward and staying positive, no matter how we feel today or might feel tomorrow.

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.