The Battle of Chronic Illness
Walking the road of chronic illness is often a juggling act. I don't always know where the appropriate line is in the sand; if I share too much, I'm too personal and seeking attention, but if I don't share at all, people might think my illness is invalid. Sometimes my friends come to mind; the ones with other chronic illnesses, and I compare my journey with theirs- what they say, and what they don't, how they make sense of their stories, and if they choose to have a handicap permit hanging in their car window or not. Somehow, I feel like I need to referee all these scenarios and opinions and outcomes. Today, I free myself of the play-calling burden and I just bring you my heart. Because as I come to the end of a long day, I realize I'm just like you. I bear many joys and carry many burdens. I cry from gut-wrenching laughter, and I weep over loss. I love my family. I try to do more good than I do bad, and I recycle because I care for the world in which we live. It's under the banner of humanity that I rest my hat.
My entire life, I have been sick and pained. For many years, no one believed me, and the repeated act of invalidation marked me. When the diagnoses codes started rolling in like the waves of the sea, the validation I had been searching for felt like too heavy a burden to bear. I didn't want to be sick. In fact, maybe it would be better if it were all in my head, but it was too late. That elephant was standing in my bedroom and now it demanded attention and respect.
In 2017, I had an outpatient procedure during which I received Propofol, a common anesthesia drug, and it multiplied the havoc in my already deteriorating body, most likely due to mast cell activation syndrome (MCAS). My hometown medical team was astonished. Mayo rendered no help. It was two years of constant admissions, constant IV medications, and a constant drip of money. Each time I left a hospital I did so with failing hope, because failed expectations cut deep, and fear of the unknown can be crippling.
Luckily, hope sprang forth in the form of a massive operation in 2019; an operation that both almost killed me and undoubtedly saved my life. After a grueling recovery, I found myself “better.” Not a life without widespread body pain, dislocations, the occasional migraine, an autonomic disorder, spontaneous veinous rupture, insomnia, depression, and anxiety for fun, but “better,” none-the-less. It's physically and emotionally exhausting to be sick all the time, and it takes a toll on my relationships. If I do too much, I'm not caring for myself, but if I do too little, I'm not pushing through. It's never ending.
The problem is if I don't go outside and play with my kids, despite my physical condition, then loneliness and despair plant in my soul. If I don't try to establish "normal," then defeat establishes me. Mental health bears just as much weight as my physical conditions ever have.
Just like you, my life plays out in the moment: the walks in the park, the battle for space in the grocery store parking lot, and with friends in a favorite restaurant down the street. Most days, I can bring myself to a baseline. Other days, I spend the stereotypical day in bed, praying for rescue, and on all the days in between, I find myself trying to live well and love generously, however the cards play out.
I want to win against chronic illness, and that's exactly what I intend to do, because I am just like you. I have this one gloriously messy, sometimes crazy, and absolutely absurd life. I don't have the answers, but I seek them out, because that's the nature of the human condition. I want to make the most of each day, because I've learned that life truly is a gift. I fight like mad, not because I'm angry, but because my passion cannot be contained.
So, my friend, whatever mountain you face today, I wish you grace and peace and a zeal that will not be muted. I wish you energy and love and unexpected kindness. As always, I’m rooting for you.
