Celebrating 1 Year of Writing This Column
I began this column for ANCA Vasculitis News one year ago this month. It’s been such a joy interacting with other patients who read and connect with my words.
At first, the concept of writing once weekly seemed intimidating. How would I come up with a new topic every few days? Is there really that much to discuss? Surely vasculitis doesn’t influence my entire life, right?
On this “write-iversary,” it’s interesting to note that “Peaceful Chaos” is still going strong, even though I thought for sure I’d run out of material long ago. With the exception of a week off here and there, I’ve now written almost 50 columns. Clearly, there’s plenty to talk about.
Vasculitis is complex. Patients wish it were as simple as going the doctor, receiving a diagnosis, and taking medications to properly treat it. Unfortunately, that’s not the case for the majority of us. More frequently, it begins with nagging symptoms that become too alarming to ignore, at which point a doctor visit is necessary. And that’s just the beginning of the journey.
It takes time for the full scope of a health condition to unfold, especially one as uncommon as vasculitis. The road from initial symptoms to remission — if we even get there — is a long one.
However, it’s encouraging that our community offers increasing support and resources to improve quality of life. In the past 15 years, I’ve watched doctors go from calling vasculitis a “mystery illness” to being able to identify and treat it. Vasculitis treatment centers are popping up all over the country. Imagine the strides that will be made in the coming decades, or even the next century!
Beyond the illness itself, there’s also the mental burden. Balancing our physical and psychological health sometimes feels like a teeter-totter: If one is in check, the other flails wildly. In my experience, it’s rare to have both under control at any given time. After all, I must manage typical life problems, too.
The best I can do is take care of myself through sleep, diet, and exercise, and keep happy and fulfilled in as many ways as I can. This is a lifelong struggle we all face.
Vasculitis isn’t something I can put on the back burner or only think about when it’s convenient. My health profile influences nearly every aspect of my life, including:
- Daily routine
- Location of college
- Type of career
- Financial profile
- Relationship preferences
- Exercise routine
- Travel schedule
- Emotional makeup and ability to cope
- Choice of living situation
If a cure isn’t yet possible, the ultimate goal for most of us is to achieve remission. (This can be a nebulous term, but it usually refers to an absence of inflammation.) And even if we get there, the risk of relapse is typically high. Living with this amount of instability can be a nightmare for someone who prefers to be in control.
Chronic disease sometimes feels overwhelming, leading to despondency or depression. But to keep things in perspective, it’s also done some wonderful things for me. The people I’ve met in the vasculitis community are some of the warmest and most supportive friends I’ll ever have. Volunteering for the Vasculitis Foundation has provided me with a purpose and allowed me to pay forward all the kindnesses that have been done to me over the years.
So crazily enough, I still don’t feel as though I’ve run out of material. Chronic illness is all-enveloping and time-consuming. I’m no longer hesitant to admit that it determines most things about my life. But that’s different from being apprehensive or afraid of future possibilities.
Here’s to another year of ruminating on the exciting life my disease creates for me. Vasculitis doesn’t own me, but it influences me in too many ways to name. The catch is learning to turn it all into positivity and moving forward with and in spite of challenges.
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.
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