The invisible work behind treatment and being a patient with chronic illness
No one sees the work behind closed doors, like insurance battles and advocacy
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I recently received my first Rituxan (rituximab) infusion. Most people might think of treatment as starting when the medication enters the IV. But for me and many others, it starts long before that, with paperwork, phone calls, authorizations, appointments, and a level of persistence that we patients rarely get credit for. Living with chronic illness means becoming both a patient and a project manager.
Every four to six months, I receive a Rituxan infusion to help manage myositis, or inflammation of the muscles. The infusion is straightforward enough: I arrive at an infusion center, settle into a chair for six hours, and then head home. It’s easy to assume that the treatment ends there. But for me, the real challenge begins the next day.
The fatigue can be overwhelming. I’ve experienced fatigue before, but this kind of exhaustion is in a class of its own. The day after an infusion, it feels as though my body has been run over by a truck. Combined with several days of an upset stomach, it leaves me wanting to stay longer in bed to recover. What makes it especially difficult is knowing there are things I’d rather be doing, like writing, spending time with my family, or simply enjoying a good day, but my body has other plans.
Shouldering the burden
What many people don’t see is the amount of energy these battles consume. Every phone call, every insurance appeal, and every request for additional documentation requires time and focus that I’d rather spend elsewhere. Instead, chronic illness often demands that I become my own advocate, administrator, and case manager.
What many people fail to realize is that treatment often depends on a series of approvals that must happen in exactly the right order. A prescription must be submitted, an authorization must be reviewed, and additional information may be requested. There are often phone calls between physicians, pharmacies, infusion centers, and insurance companies. If something falls through the cracks, the burden frequently falls on the patient to follow up and make sure the process keeps moving.
For someone like me living with pulmonary fibrosis and myositis, these tasks aren’t minor inconveniences; they require energy that is already in short supply. There are days when I feel as though I spend more time managing my healthcare than living my life.
My diseases don’t know the meaning of “wait.” Pulmonary fibrosis and myositis don’t pause while paperwork is processed or approvals are reviewed. Every delay gives these diseases more time to progress, leaving patients feeling increasingly helpless. There is a particular agony in having to battle insurance decisions while simultaneously battling chronic illness.
We patients are frequently told to focus on our health, yet the healthcare system often places the burden of navigating treatment directly on our shoulders. For those of us living with chronic illnesses, the work of staying alive can sometimes feel like a full-time job.
I know I’m not alone in this experience, as many people face similar challenges. We become experts in insurance terminology, medication schedules, and healthcare systems because we have no choice. We learn how to appeal denials, track paperwork, coordinate appointments, and advocate for ourselves. These skills are rarely listed as side effects of treating chronic illness, yet they become essential to receiving care.
Patients are often praised for being strong, resilient, and determined. Yet much of that strength is spent navigating a system that should be helping us. The invisible work of chronic illness is rarely acknowledged because it happens behind closed doors. No one sees the paperwork spread across the kitchen table. No one sees the calendar filled with appointments, lab work, and specialist appointments. No one sees the hours spent on hold while trying to secure the treatment that a physician has already prescribed.
But we patients see it. We live it.
The day of my infusion lasts six hours. The work required to receive it lasts weeks.
The next time someone sees a patient sitting quietly in an infusion chair, I hope they remember that the treatment didn’t start with an IV. It began with persistence and a patient fighting for access to the care they need.
For many of us living with pulmonary fibrosis and other chronic illnesses, that invisible work is part of the treatment, too.
Note: Pulmonary Fibrosis 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 Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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