The invisible math that goes into scheduling with a rare disease

As I plan upcoming work trips, I’m reminded how complex my scheduling is. For many, planning just means booking and showing up. But because I live with a rare chronic illness and juggle multiple roles, my plans constantly shift with medical and work demands.

My calendar isn’t just filled with day-to-day tasks. It includes weekly and monthly medical care layered on top of work and life: doctor appointments, procedures, labs, infusions and other treatments, follow-ups, and recovery time. Then add travel for advocacy, community events, and conferences, as well as family milestones, deadlines, and sometimes just a simple dinner.

Living with IgG4-related disease (IgG4-RD) and other chronic conditions means that scheduling always involves behind-the-scenes math. I’m constantly calculating what I can realistically do, what I can safely do, and what I can do without triggering consequences that ripple for days or weeks afterward.

I’ve noticed this invisible math isn’t unique to me. When my patient advocate colleagues and I try to find a time to meet, it can be surprisingly difficult. We juggle different time zones, work responsibilities, and family commitments, but also fluctuating symptoms, treatment schedules, and unpredictable flare-ups.

In those moments, I’m reminded how different scheduling becomes when your health has no stable baseline. It’s not simply “Are you free Tuesday?” It’s “What will Tuesday cost you?”

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One of the most practical “life hacks” I share with patients is this: Track your symptoms, medications, major flare-ups, and relapses. Over time, patterns appear, and those patterns become the most effective planning tool.

I’ve learned that about eight weeks after my Rituxan (rituximab) infusions, I usually have a head and neck flare. Knowing this helps me decide when to accept invitations, travel, or commit to demanding activities, especially if they’re a month or two out.

Currently, I’m experiencing a relapse, with both Rituxan infusions and two work trips scheduled for June. I’m juggling medical needs with work responsibilities.

I’ve postponed infusions before due to work travel, and I’ve paid a heavy price afterward. Traveling during a relapse is not for the weak. With systemic disease, especially head and neck involvement, air travel can trigger inflammatory symptoms that don’t go away when the plane lands. After flights, I may deal with prolonged vertigo, postural orthostatic tachycardia syndrome (POTS) episodes, pre-syncope, and trigeminal neuralgia flares. Those aren’t minor inconveniences; they can derail my ability to function, participate, and recover.

Because of post-flight symptoms and flare-ups, I often have to add two days to each end of a trip if the flight is longer than three to four hours. That means extra hotel nights, extra meals, extra transportation, and extra time away from home. It also means extra costs — an added layer of stress that people rarely see when an advocate walks onto a stage or shows up at a conference.

And then there’s the cost of the flight itself. Because of my conditions, I often need seating that provides enough legroom to minimize risk, especially with POTS and concerns about circulation and clotting. That usually means paying more, and so the math continues.

I’m adding together medical scheduling, recovery time, accessibility needs, and budget planning — all before I even pack a suitcase.

What makes this harder is that community-based patient advocacy often requires significant time and effort without consistent pay or compensation. Many of us contribute because we care. We’ve lived the gaps in the system and want to close them for others.

But when the personal cost of participation is this high, it becomes another barrier to equitable healthcare and representation. It’s difficult to build a better system when the people doing the building are also trying to survive the system.

Sometimes I have to choose between treatments, work obligations, and social occasions. That kind of decision-making takes a toll. It strains mental health, challenges relationships, and slows progress in a world that doesn’t make room for recovery time or reward people for pacing themselves.

Even when I can physically manage travel during a relapse, I may not be able to manage the financial impact, especially when chronic illness already requires so much rationing of energy, money, time, and access.

As my life with IgG4-RD and other conditions continues with all of its complexities, I hope these realities reach someone with the ability to push for change in areas where patients cannot push alone.

And to my fellow ”IGGYs” (my term for IgG4-RD patients), I know it’s hard. You are not alone. Speak up about the hurdles — medical, financial, logistical, and emotional — whenever and wherever you can. The more we speak about these hidden obstacles, the harder it becomes for the world to pretend they don’t exist.

Note: IgG4-RD 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 IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.