In life with vasculitis, surround yourself with people who ‘get it’

I got a COVID-19 vaccine this week. It was the first one I’ve had since going off Rituxan (rituximab), and wow, it kicked my butt. It reminded me just how effective Rituxan is at wiping out the immune system, because without it, my little overactive system went into full overdrive. That’s not to say I regret getting the vaccine — far from it. For me, it brings peace of mind.

COVID-19 knocked me down hard last year. It was my first infection, and I was sick for almost three months. I rarely left the bedroom. When I finally managed to walk around the house for 10 minutes, long COVID-19 hit, lasting another seven months. If you’re counting, that’s nearly a year. I never want to go through that again.

Those of us with ANCA vasculitis — especially if we have lung or gastrointestinal involvement — are at real risk when it comes to viruses. COVID-19 was one of the reasons last year felt so brutal (an understatement). But this column isn’t actually about COVID-19. It’s about something equally important: surrounding ourselves with people who truly get us.

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This week, I felt like I had a mini bout of COVID-19 layered on top of the staph infection I came down with. Staphylococcus aureus is a frequent ANCA vasculitis visitor, and it has settled into me once again. Between the vaccine reaction and the infection, I spent three days in bed and had to do something I absolutely hate doing: cancel plans and meetings.

In my last column, I discussed the value of underscheduling, a concept I still firmly believe in. However, I think there’s something equally essential: prioritizing ourselves and our bodies. And wow, is that hard.

After canceling three meetings, I was met with compassion and well-wishes — not a hint of irritation or judgment. And yet, I still managed to supply plenty of the latter myself.

Do you ever find that when you cancel plans, when you say “I just can’t do it” or “I want to, but I shouldn’t,” your mind immediately starts telling stories about what other people must be thinking? I do. I tell myself they’ll think I’m unreliable or ineffective. That they’ll disengage or pull back. That they’ll move on. My brain can spin out a whole catalog of imagined criticisms — but the truth is, those voices aren’t real. They’re just the nasty little narrators living rent-free in my head. And when you’re living with a disease as rude, unpredictable, and complex as ours, that internal cruelty only makes everything harder.

What understanding feels like

Today, this all hit me when I had to change an appointment with someone at Bionews, which publishes this site as well as IgG4-RD News. My advocacy nonprofit, the Eosinophilic & Rare Disease Cooperative, also supports the IgG4-related disease community, so I work with this person due to that connection.

Her response wasn’t surprising, but it still brought tears to my eyes — good tears. She was kind, gentle, understanding, and more focused on whether I had the support I needed than anything else. I shouldn’t be surprised; it’s one of the reasons I love Bionews so much. More than half of the team lives with chronic and rare health conditions. They get it. They work with it. Just like we do.

It made me think: What if we intentionally surrounded ourselves only with people who are kind, gracious, understanding, and flexible? What if the people in our lives didn’t just tolerate our reality but respected it?

I know that might mean letting go — maybe not literally, but emotionally — of people who simply don’t get it. It might mean shifting how we work, especially if we’re in environments that are at odds with our reality. It might mean finding a new doctor who actually listens and cares. Or it might mean shifting our own mindset: When people don’t “get it,” maybe the most compassionate thing we can do for ourselves is to recognize that their lack of understanding is about them, not us.

We deserve people who respond with kindness and gentleness. We deserve care, especially from ourselves. And on the days when we need to cancel, rest, retreat, or say, “Not today,” maybe we can coat ourselves in a metaphorical layer of Pam cooking spray — so that the guilt, shame, and imagined judgment can slide right off.

Just a thought. But maybe one worth holding close.

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.