- Ashton Kutcher recently shared that he had a flare-up of vasculitis a few years ago.
- Vasculitis is a family of autoimmune disorders that causes inflammation of blood vessels.
- I also have vasculitis. Here's how I've learned to manage when I experience severe symptoms.
For people with vasculitis, an autoimmune disorder that affects the blood vessels, symptoms can be wide-ranging and can come and go in waves. Some people with this condition — which is actually a family of diseases — can go into remission, while some people experience it chronically.
I developed systemic urticarial vasculitis in 2016, but I didn't receive a diagnosis or treatment until 2018. My symptoms, including numbness in my legs, severe pain, and respiratory issues, affected my life so much that I had to take a break from university.
In an episode of "Running Wild With Bear Grylls: The Challenge" that aired in late July, Ashton Kutcher said he had a flare-up of a rare form of vasculitis that affected his balance, hearing, and vision. Kutcher also shared on Twitter that he's recovered from this flare-up and will be competing in the New York City Marathon this year.
Learning to go at my own pace
Though I have no plans to become a marathon runner, I can relate to having my symptoms subside to an extent that I'm able to enjoy life more. My chronic fatigue from my vasculitis still affects my day-to-day life, but my overall quality of life is better.
In addition to taking my prescribed medication — including colchicine daily and prednisone during flare-ups — the one thing that has helped my life the most is taking a rest from physical activities, something I had a hard time doing initially.
It was not only hard for me to make room for downtime in my schedule but also difficult for me to admit to myself that this was something my body needed when other people my age could seemingly balance school, work, and having a full social life.
I took a semester off from school in 2018 during the spring semester, during which I spent a lot of my time going to doctors' appointments and resting in bed. But even that was not enough to take care of my body. I'd transferred to a school in New York City and was constantly commuting between classes, internships, and my apartment for the semester that followed my semester off. Chronic pain took away the possibility of me having a social life during this period.
Before moving to New York, I saw a pain psychologist who talked to me about the importance of setting my own pace, but being the stubborn overachiever that I am, I didn't listen to this practical and necessary advice. This seemed like I was letting vasculitis "win," when in fact it would help me.
Reclaiming parts of my life I thought I might not get back
It wasn't until the pandemic when I had to stay home that my chronic pain started to improve. While I worked remotely, I didn't have to take hourlong subway trips to get where I needed to go. My joint pain dropped from being an eight out of 10 every day to about a three or four.
I constantly make choices to keep my vasculitis symptoms in check. This includes knowing that I can't pull all-nighters and regulating how much alcohol I drink. I started graduate school in September, and soon I'll be entering my second year.
I also live near my campus. This makes it much easier to walk to my classes, which are mostly in person. I make sure to always leave my apartment early so I don't have to rush to get to class. While it certainly wouldn't be any sort of moral failing if I did experience these symptoms, it's been a relief to not fall because of numbness in my legs or experience respiratory distress.
Through pacing, I'm able to reclaim parts of my life that I thought were gone, like being able to go on a walk from time to time. And though I'm definitely not going to run an actual marathon, I'll be walking across the finish line of graduate school next year — something I didn't think was in the cards for me when I was dealing with more severe vasculitis symptoms on a day-to-day basis.
As much as I don't want vasculitis to affect my life, the truth is that it has — and that it will continue to. But there's another truth that exists alongside that one, and it's that my symptoms can be better managed if I prioritize my health. I can still live a full and successful life with my autoimmune disorder. While there are different kinds of vasculitis, and people may experience symptoms differently, people with this condition can reclaim parts of their lives with balance and other symptom management.