When you think of chronic illness, do you think of hospitals, IVs, surgeries, long or frequent inpatient stays, or GoFundMes? Do you picture someone who “looks sick”?
While those things can certainly be a part of someone’s journey with a chronic illness, it doesn’t always look like that.
Throughout my life, I have continuously found myself in a gray zone of chronic illness. I see it as the gray zone because I am too sick to live without constant medical monitoring and intervention but I am well enough to live a life outside of the hospital.
Every single day, I experience various symptoms from my numerous medical conditions. I spend time each day taking medications, doing medical treatments, and cleaning and charging my assistive devices (glasses, hearing aids, breathing machines, etc). I am able to function well most days. I can usually play sports, coach my kids’ sports, and maintain regular involvement in my family life and community.
Then there are periods when I need to step back from “normal” life to rest and focus on my health and medical care.
Those more difficult times have only rarely included inpatient hospital stays. I am very grateful for this as there are a host of challenges that come along with more intense, inpatient medical care, including insurance coverage, cost, childcare, missing obligations, and potential job loss.
But my ability to manage my chronic illnesses makes me question everything. I find myself pondering, “Am I really that sick? I haven’t been admitted to the hospital in years, It can’t be that bad, right? My conditions are obviously nothing dangerous.”
Recently, I began reflecting on the past year and the challenges I endured from my chronic illnesses. I tallied up the total number of medical appointments I had in 2022.
200.
This includes 1 surgery, 12 ER/urgent care visits, 13 Nucala treatments (for asthma,) 8 diagnostic tests, dozens of specialist visits, and numerous weekly therapies.
200 seems like a lot, right? Behind that number is even more unseen work required for me to manage my chronic illness.
This number doesn’t include the countless hours I spent scheduling (and rescheduling) appointments, or time spent calling or emailing my providers to discuss changes and adjust treatment plans. It doesn’t include many meetings with my nurse care coordinator and patient advocates. It doesn’t include the near-weekly trips to the pharmacy to get my many prescription medications, over-the-counter medicines, and other medical supplies. It doesn’t include the hours I spend working with my insurance to ensure my medical care is covered. It doesn’t include the time and mental energy spent on planning childcare arrangements for my young children. It doesn’t include the endless hours I spend researching my medical conditions, treatment options, and care providers.
That number doesn’t include the time and energy spent coping with the emotional hardship of the chronic illness itself or of the burdensome management.
That number doesn’t reflect the vast cost of insurance, copays, out-of-pocket costs, childcare, or gas, required to manage my chronic illnesses. It doesn’t reflect the stress of the constant fear of losing my health insurance.
While I may not depict even my own preconceived idea of someone with chronic illness, I need to stop questioning if I’m “actually sick”.
The amount of time, effort, energy, and money I put into my medical care speaks to how much my life depends on it. My quality of life is directly impacted by my medical care. Each appointment, medication, or therapy directly affects my ability to be active in my own life.
I am extremely fortunate to be a stay-at-home mom. I’m not trying to juggle all of this on top of a job. Though it adds to my burden of finding childcare outside of typical daycare settings, I am generally able to field phone calls throughout the day and sometimes take appointments on shorter notice. I am fortunate to receive disability benefits and to have a partner with a career that can reasonably support our family. I’m fortunate to have my own transportation, which decreases the time I spend getting to and from my appointments.
Many people living with a chronic illness are not as fortunate.
In the United States, 60% of adults have a chronic health condition. Of those, 40% have two or more chronic health conditions. I’m not alone in my “gray zone”. Many other people, likely mothers, fathers, neighbors, teachers, etc, may quietly share my struggles. Someone you know may be doing more work than I do just to get through their days.
If you know someone who lives with chronic illness, check in on them. While they may seem like they have everything under control, the work of managing a chronic illness comes at a huge emotional, physical, and financial cost. Acknowledge the work they do. Look for a simple way you can help support them and ease their burden.
If you live with a chronic illness, I encourage you to ask for help. You don’t need to be hospitalized or suffer greatly before you lean on extra support.
The work of managing chronic illness deserves to be seen and acknowledged. It is real, it is valid, and it is freaking HARD.
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