My Years-Long Battle to Learn Why I Can't Breathe Gave Me Serious Trust Issues
I have trust issues. And amazingly, they don’t stem from one too many “trust falls” gone wrong from my younger years (though maybe that contributed). My trust issues center around bigger things: trusting my body, trusting my doctors, and trusting… life.
I was diagnosed with atypical cystic fibrosis (CF) one month and eight days before I turned 20. I had been complaining to doctors for as long as I can remember about having trouble breathing, being tired all the time, getting sick if I ate “normal” kid food, and of course, my bi-monthly “asthma attacks” that left me unable to talk, breathe, or swallow for up to a week.
“It’s asthma,” my pediatrician would say. “She’ll grow out of it.” When my chronic digestive symptoms worsened around age 13, I was told to drink prune juice. When that didn’t work, it was medication. Nothing worked. My diet became more and more restricted to the five things I knew wouldn’t make me sick: lettuce, cucumbers, frozen strawberries, bananas, and protein powder. I got sicker and sicker, and it was clear that I wasn’t healthy.
I started figure skating when I was 8 years old and quickly knew I had found my heart’s passion. I fell in love with it and trained to the best of my body’s ability — withholding from my coaches the pain it caused. I felt like figure skating seemed to wear me out and be a lot harder for me than for my training partners. Skating isn’t a sport that welcomes showing “weakness,” and since I was being told by all of my doctors I was “fine,” why would I say anything?
After graduating high school, I moved and started training at an Olympic training center with renowned coaches from all over the world. I was living my dream—but trying to ignore the so-obvious fact that my body was breaking down. Just from my appearance, it was hard for anyone to ignore it — including my coaches.
After only five months of professional training, I had a serious fall that took me off the ice and also led to my getting diagnosed with osteoporosis at only 18 years of age. I was terrified and heartbroken — being told I needed to stop skating because it was too risky for my bones was hard.
I was no longer able to train or skate at all, so I moved home feeling utterly defeated. I knew something wasn’t right — everyone did — but I didn’t have any faith that doctors would finally be able to tell me what was wrong instead of just dismissing me as usual. Ironically, my saving grace came in the form of a lung infection — pseudomonas aeruginosa, to be exact. I woke up unable to speak or swallow, thinking my training-too-hard days were finally catching up with me — only to find out that my lungs were swimming with super-rare, hard-to-harbor bacteria. The urgent care doctor casually dealt me some medication and assured me I would be better in 10 days.
Being the investigator — and skeptic — I am, I wasn’t convinced (or reassured), so I consulted “Dr. Google” to find out how in the world I came down with this rare infection.
I learned that there are basically three conditions that can make you contract this bacteria — acquired immunodeficiency syndrome (AIDS), cancer or cancer treatment, or cystic fibrosis. I knew I didn’t have AIDS and I had not had chemotherapy or radiation, so all that remained was cystic fibrosis. “There’s no way I have that,” I said to my mom. “That’s that ‘baby disease!’ They would’ve caught that.”
I pulled up an article about CF, reading through the symptoms just in case. As I did, my heart sank and tears flooded my face as I realized that everything made sense. All the puzzle pieces fit together. How in the world had the doctors missed this?
I returned to my pediatrician — now no longer content to accept her prune juice and prescriptions. “I want you to test me for cystic fibrosis. I think I have it,” I insisted. She ceased her note-taking and looked up at me blankly. “I think you might be right,” she replied.
I was referred to my nearest cystic fibrosis center for evaluation and testing. By the time of my appointment, I had struggled to eat and was so weak I could hardly walk. When the doctor at the cystic fibrosis clinic walked into my room, she took one look at me and immediately sent me down to the emergency room to be admitted.
A little less than a year after that, I got my genetic test results and was told it’s not “typical” CF, but a rare variant of it instead — one that doctors and researchers know absolutely nothing about. All they knew from clinical observations is that those of us with this form of CF fare no better than others with CF… and sometimes we’re even more affected.
My initial shock-turned-sort-of-relief after actually having a diagnosis was smashed once I was told, “We don’t know how to help you.” The fact that my condition was getting more severe every month didn’t help. I started having one obstruction every week. I upgraded to GoLytely as my drink of choice — until even that stopped working. I did everything I knew to do, and my efforts did help — but only to keep things at bay. Eventually, the things I tried weren’t even readily doing that.
In 2019, I had surgery for an ileostomy, which improved my quality of life and health tremendously… but not before I experienced literally every complication you can possibly have with an ostomy. One complication still lingers — prolapse — a common symptom in both CF patients and those with Ehlers Danlos syndrome (EDS), which I was also diagnosed with in 2020.
Living with both cystic fibrosis and Ehlers Danlos syndrome is hard for me. The two diseases so often conflict with one another (Imagine a chronic cough with a hole in your abdomen and weak connective tissue!), and I honestly struggle to deal with them both. Most days, I feel terrified of when the other shoe will drop. I know I have more surgeries ahead — some of which will be harder than the ones I’ve already had. It’s another terrifying thought.
So how can you trust that everything will be OK when nothing has been OK in a long time? I honestly don’t know. And after a long time of trying to figure it out, I’m not trying anymore. Trust is a brutal battle — just like an organ shutting down or an insurance pre-authorization.
Sometimes trying to find the answer to unanswerable questions — like how to trust with a disease — isn’t necessarily the answer we maybe should be trying to find. Sometimes the only way to figure out how to keep going is to step back and realize we have been going — day after day, month after month, year after year. And even when it’s our bodies that so often betray us, we may need to step back and acknowledge that our bodies have enabled us to keep going. Sick or not, CF or not, EDS or not, it keeps surviving. And that body? The one that’s been through what it’s been through and still keeps on? That’s something we can trust.
Getty image by gorodenkoff.