The Unseen Fight: Isolation, Eye Rolls, and Resilience
We welcome guest blogger, Meagan Justus. Meagan currently resides in Richmond, Virginia, where she’s on a quest to live her best life—one stubborn health challenge at a time. She writes about chronic illness, disability issues, and complex trauma, with bits of humor along the way. You can follow her at www.creativelyvisible.com.
You’d think I’d be a pro at managing the curveballs of the healthcare system after dealing with chronic illness for most of my adult life. I’ve built a solid toolkit: crying into chocolate ice cream (the soothing go-to), mindlessly scrolling Instagram for memes that make me laugh, a great therapist, and journaling are all helpful.
No matter how prepared I am, loneliness always finds a way in, like an uninvited mother-in-law who overstays her welcome. What’s worse is when I say, “I don’t feel well,” and someone insists, “Well, you look fine,” dismissing my words as if my suffering isn’t real unless it’s visible.
Chronic illness often leaves one feeling invisible, and sometimes, the medical community refuses to see you at all.
I struggled for days to breathe after a chest port was placed improperly.
“We’re giving you asthma treatments.”
That would’ve made sense had I had asthma.
For three days, I struggled to breathe; every time I’d sit up, my world spun, and I felt like I was shouting into the void. My oxygen levels had never dropped low enough to convince them I was in real trouble.
Breathing at a significantly reduced capacity is apparently considered “fine” as long as you aren’t turning blue.
A chest X-ray revealed one collapsed lung with the other ready-to-play copycat. As I was rushed back to surgery, all I could think was, "I told you so.”
Another time, I was told I needed an emergency hysterectomy. The surgeon assigned to my case lacked an understanding of the physical, emotional, and mental impact of such a life-altering surgery on a woman in her early 30s.
On Valentine’s Day, I woke to the heartbreaking reality that I would never have the family I had always envisioned.
The surgeon barged into my room, furious the surgery had taken longer than expected due to scar tissue—something I hadn’t known about.
His look of disdain cut deep, “Have you ever been a victim of sexual assault?”
I timidly replied, “Yes.”
“Girls like you get this kind of scar tissue.”
What on earth does that even mean? I rolled my eyes internally as my entire world tilted. A hot and heavy wave of shame washed over me, leaving me feeling exposed and small.
The medical community had never been a safe place for me to discuss my trauma, and no one had inquired. Instead of receiving support, I was met with blame, causing my gut's hollow feeling to intensify. Filing a complaint with the hospital over how I was treated? About as effective as whispering at a rock concert.
Amid the storm, there was a beacon of hope and encouragement. A physician from my family practice came to visit me. Empathy poured from her eyes as she gifted me a beautiful pajama set. It wasn't your typical prescription, but in that moment, her kindness was a balm I desperately needed.
She saw me as a human being, not just a statistic or a complicated chart.
Years later, I found myself at a renowned medical center, still a mystery to the doctors back home. Almost daily for six weeks, I was poked, prodded, and tested like a lab rat. The technicians were kind, but each specialist seemed to focus on one tiny part of me, never seeing me as a whole person. After all those tests, my final appointment with the coordinating doctor felt like a cliffhanger.
"Clearly, you have a second disease,” he said. “It must be something rare since we can’t figure it out. Maybe as you get older, we'll be able to identify it, but right now, we can't."
Great, just what every lab rat, I mean patient, wants to hear."
When I asked if he had any ideas for managing my pain or symptoms, he started to squirm like a politician being asked a challenging question. "Well, some patients just aren't motivated to get better."
I blinked. My head suddenly felt like a volcano about to erupt.
Motivated? He didn't just say that, did he?
"I lost my job, house, and car, and I've given up my social life because I'm too fatigued to hang out with my friends. I traveled 1,000 miles and asked family and friends for financial help to get to this world-renowned center. My main goal is to get back on my feet and work again. What part of 'lack of motivation' does that scream to you?"
Again, I was a jigsaw puzzle with missing pieces, a fragmented being yearning for wholeness. It’s one thing to be dismissed by people who don’t know you, but when the medical community, with all its expertise, decides to overlook your experience, the loneliness can feel even more suffocating.
Two hours after getting the COVID-19 vaccine in 2021, my legs went numb from the waist down. The next day, I limped into the ER, where the doctor confidently declared it was just a symptom of my long-standing POTS (postural orthostatic tachycardia syndrome). “Not related to the vaccine,” he said with the confidence of someone who hadn’t spent 30 years getting to know my POTS like I had.
I explained that my symptoms did not resemble those of POTS, but the medical staff had already formed their conclusions. They referred me to a neurologist as if it were a consolation prize. I had to wait six weeks to see a neurologist who confirmed, "Yes, this is a complication from the vaccine that we are seeing, but we aren't treating patients with this here, so you'll have to go somewhere else for care." I was confused and angry because this was a Level 1 trauma/teaching hospital, and they didn't even want to attempt a complete evaluation or treatment.
Currently, in the medical world I carry the label "rare and undiagnosed"—not exactly the milestone I was aiming for. Describing the daily struggle of extreme solitude, fear, and juggling the basic activities of daily living is like explaining to a Floridian what living through a blizzard is like.
Despite the confusion, anger, and sadness that linger like stubborn shadows, there is light and warmth. I am fortunate to have family and friends who offer support. My fellow chronic illness buddies know when to send me “same here" texts, and together, we come up with some of the funniest t-shirt slogans that keep us all laughing.
I am grateful to have a fantastic team at Vanderbilt University Medical. Dr. Amanda and Dr. James are my medical superheroes. After years of feeling like a medical mystery, being treated, seen, and cared for as a whole person feels like a victory.
My team sometimes feels uncomfortable not having all the answers, but they never take that out on me. They acknowledge that it’s more challenging for me as the patient living the experience. Their dedication and willingness not to give up or drop me as a patient, their commitment to finding answers, and their genuine listening skills make them exceptional healthcare providers.
Chronic illness may be challenging, but we're not alone. Our shared wisdom, medical breakthroughs, and a dose of humor can help us find strength and resilience.
