Pittsburgh is known for world-class medicine.
Orthopedics, neurosurgery, oncology and trauma care save lives here every day. When illness can be seen, measured or removed, patients are often met with urgency, expertise and extraordinary compassion.
When, though, an illness doesn’t show up neatly on an MRI, CT scan or blood work, the care often changes.
I felt that contrast sharply while sitting beside my mother at UPMC Magee-Womens Hospital as she was seen for breast cancer. Every person we encountered was kind and compassionate. Every question was careful. Every concern was taken seriously. Anxiety and depression were discussed as part of her care, not as a reason to doubt it. She didn’t have to prove she was sick. She didn’t have to advocate just to be believed.
I was grateful for the support shown to her — and quietly grieving for myself.
For patients with conditions like long COVID, POTS, ME/CFS or mast cell disorders, our symptoms are real. Our test results, though, are frequently labeled “normal.”
This leaves many of us outside the care and reassurance built into cancer treatment. Instead, out of necessity, we become our own researchers and advocates, learning through bitter experience to hide our anxiety or depression so doctors can’t weaponize it to strip away our medical credibility.
Invisible illness is waking up exhausted no matter how long you slept. It’s forcing yourself to get up, dizzy and lightheaded then hydrating to build your blood volume. It’s taking Cromolyn solution so you don’t react to meals. Invisible illness is carefully planning out each day the night before. (I can allow myself two tasks or appointments before my body runs out.) It’s resting after a bath, because even that takes more energy than it should.
Complications from COVID
When I got COVID-19 for the first time in January 2022, I thought initially I was just dealing with a horrible virus. Two weeks after isolating in my bedroom the spinning began. Every time I closed my eyes, it felt as though my bed were tilted at a 90-degree angle and I was sliding toward the floor. Walking to the bathroom became an expedition. Scared and feeling helpless, I called out to my daughter to help me. I crawled on my back because standing felt impossible.
It took more than six months before I could walk again without feeling like my brain was shaken up like a snow globe. Still a few more months more before I could attempt driving — and even then, I felt like the car was still moving at each red light stop. My heart rate would spike to 170 just sitting at a table. A second COVID infection in November 2024 brought back the vertigo, milder this time, but now my blood pressure wouldn’t hold steady either. I felt weaker and more exhausted by the hour.
The brain MRI was normal. The blood work was normal. For years, “your labs are normal” became its own kind of diagnosis.
I was told I needed to set goals. Find a hobby. Get more structure. One doctor reminded me that I was “just” a stay-at-home mom not long after I had my daughter, as though the problem was a lack of purpose rather than a body that was struggling to function. Instead of real care, I was gaslit into believing my physical issues were merely anxiety and depression, then shown the door. Seeing the pattern, I learned to keep quiet.
That is one of the cruelest parts of being chronically ill: You can become an expert at describing your own symptoms and still find yourself trying to convince someone that they exist. My body was telling me something was terribly wrong. My medical records weren’t.
I was familiar with living in a body that doesn’t cooperate even before COVID. That diagnosis heaped new layers of symptoms onto the migraines, chronic fatigue and ADHD-induced information overloads.
I joke some days that celiac is my least problematic diagnosis. But underneath the joke is the reality that managing all of this has become a full-time job.
‘Don’t follow every shiny idea’
Perhaps the scariest part is how my illnesses impact my ability to keep track of time and my surroundings – sometimes placing me in danger.
One afternoon I pulled off the road to photograph some scenery above the Great Allegheny Passage trail. I left my purse, phone and keys in my unlocked truck and wandered into the woods after something caught my eye. Hours or what felt like hours later, thirsty and disoriented, I realized I had no idea where my truck was. I had spent so much time chasing one distraction after another that I’d lost my way entirely.
My daughter later laughed and said, “Mom, don’t follow every shiny idea.” We both laughed, but underneath was a truth I wasn’t ready to admit: My brain wasn’t working the way it once had.
Strategies, not shame
Just as my internal approach to healing began to shift, I also discovered real support forming around me.
Walking into my speech therapist’s office two months after getting COVID felt like putting down a heavy bag I had been carrying everywhere. For the first time in years, I didn’t have to explain why I was struggling or prove that something was wrong. On and off over the next four years through my worst setbacks, Stephanie would begin each session with two simple questions: “What wins did you have this week?” and “What was challenging?”
Those questions changed the way I saw my life. She wasn’t only looking at what I couldn’t do. She helped me recognize progress, even when it was small. When a task felt impossible, she taught me to break it down into smaller, manageable steps instead of becoming overwhelmed by the entire mountain in front of me.
After years of feeling like my brain was failing me, she helped me understand that I needed strategies, not shame.
My therapist, Adrienne, gave me something I didn’t realize I desperately needed: a place where I didn’t have to minimize what I was experiencing. Chronic illness affects more than a body. It changes relationships, identity, confidence and the way you see yourself. In our sessions, I learned to recognize the emotional weight I had been carrying.
Every Thursday, I log into Zoom and am greeted with her warm smile and a sincere, “How are you doing?” Whether from my bedroom or parked between appointments, this is an hour where I don’t carry that weight alone. When her dog wanders across the screen, it feels less like a clinical appointment and more like genuine connection.
Some weeks we untangle learning to advocate for myself while navigating the healthcare system. Other weeks we work through the grief of chronic illness, my cognitive issues, the challenges of ADHD, or ways to make my daily life more manageable. She celebrates my small victories, encourages me when I feel stuck and gently reminds me to care for myself with the same compassion I so easily offer others.
That kind of presence has brought healing from years of dismissals. Adrienne understands that chronic illness has made my world much smaller, but instead of focusing on everything I lost, she helps me discover what is still possible while honoring the limitations my body has imposed.
The social cost of sickness
I still grieve ordinary things most people never have to think about. Running errands without wondering if I’ll have enough energy to cook dinner afterward. Accepting an invitation without mentally calculating how many days it might take to recover. I grieve the ease with which healthy people move through the world.
That is one of the loneliest parts of being sick: You can desperately want to be with the people you love and still be unable to fully participate in the moment. You can look perfectly fine while quietly calculating how much energy you have left.
People often tell me I don’t look sick, usually right before asking for a favor I don’t have the energy to give, or assuming my life must be easy since I’m not working 40 hours a week. I want to scream: Can’t you see how I feel? Instead, I smile and push through, then spend the next several days recovering in private. Some days I think I’d need to drag a leg behind me before anyone would believe how much pain I’m in.
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My mother experienced compassionate healthcare without even asking. My journey has spurred years of questions, and no final answers.
I know exactly who I thought I’d be by this stage of my life. I can still see her chasing stories with a camera around her neck, saying yes to adventures without calculating how many days she’d need to recover, planning her future instead of her next medical appointment.
I still grieve that version of myself, and I probably always will. My body simply hasn’t allowed me to become her.
I may never find a doctor who can make all of my illnesses disappear. Chronic illness rarely offers that kind of neat ending. But I have found people who remind me that healing isn’t only measured by normal lab values. Sometimes healing looks like finally being believed. Sometimes it looks like a therapist helping you build a life around your limitations.
My body has changed the life I imagined, but I’ve stopped waiting until I’m fully healthy to enjoy the parts that are still mine. There is still beauty to capture and stories worth telling. These days, you’ll still find me with a camera around my neck, standing beside the river, photographing my dog or the reflection of a bridge in the water — finding meaning in the life I have right now.
Jennifer McCalla is a writer, photographer, dog lover and a contributor to the McKeesport Community Newsroom and can be reached at jenniferm1723@gmail.com.
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