It’s OK to feel frustrated by the unpredictability of life with vasculitis

On a Wednesday, I received a call that my surgeon wanted to move up my cervical spinal fusion because the damage from my bones pressing into my spinal cord was too serious to wait. It would take place less than 48 hours later, on that Friday. But when Friday morning arrived, the surgery was canceled because the risk of immune suppression from my eosinophilic granulomatosis with polyangiitis treatment outweighed the risk of delaying.

If you live with ANCA-associated vasculitis, you know the exhausting math we do. The drugs that keep our immune systems from attacking us can create other challenges. Undergoing surgery while immunosuppressed increases the risk of infection. Timing matters and is complicated. Go too long without our medication, and we risk a flare, which can pose significant dangers and complications to surgery. But when the medication is at its peak effectiveness, the resulting immune suppression affects safety and healing. There is no clean answer — only the least-bad option, recalculated again and again.

Don’t get me wrong, I am grateful for the caution. An infection is not worth it. I would rather have a team that pauses than one that rushes me into harm.

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At the same time, I cried. I got angry. My wife and I felt the floor drop out from under us, again. All of these things are true at once. That’s the reality of living with a disease like ANCA vasculitis. The only thing that’s predictable is that we’ll have an unpredictable life.

We had cleared our calendars. My wife rearranged everything. My mom booked a flight to come help. Then, in a single phone call, it all came undone. Everyone who loves me got jolted right along with me.

You’re not alone

I was talking about this with one of the Eosinophilic and Rare Disease Cooperative‘s partners, who told me she appreciates learning about the complexities. She knows the disease is hard, but she never would have imagined the extent of the difficulty. It reaches into our families, our plans, our work lives — everywhere.

Living with ANCA vasculitis means being on top of everything, all the time. The medication timing. The lab work. The symptoms we track. The questions we have to ask, the calls we have to make, the calendars we juggle. We become project managers of our own bodies, and there is no time off. Of course, we’re tired. The tiredness isn’t a personal failing. It’s the natural cost of carrying so much for so long.

Here is what I’ve come to believe: None of us should be doing this alone.

A chronic illness is simply too hard to navigate by yourself. You need people who get it, who understand why a canceled surgery is so much bigger than a rescheduled appointment, who don’t need it explained, who can sit with you in the hard part without trying to fix it. A support network isn’t a luxury. It’s essential equipment for this ride. The most painful posts I read in patient groups are from people who are struggling with this. And I see it time and time again: The community rallies around that person, with dozens of comments offering support and sharing similar experiences within 24 hours.

Our frustration is OK. It is not a pity party or a sign of weakness, but an honest response to something genuinely hard. We are allowed to be angry that a surgery we needed got pulled away. We are allowed to grieve the plans that vanished. Naming that isn’t complaining; it’s telling the truth. I chose the title of this column, “Truth Be Told,” carefully because I genuinely believe that pain is softened in the midst of truth. It allows us to be seen, process the realities, and continue on.

So, if you’re on your own roller coaster today — frustrated, exhausted, grateful, and furious all at once — I see you. You do not have to hold it by yourself.

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.