The coughing started in 2018. At first it was only a few times a day to clear my throat, but soon, I was coughing my way through exercise, then walking from my car to my office, then meetings, then getting dressed.
Then came the wheezing and the shortness of breath. I first noticed the dynamic duo while I was doing high-intensity workouts in the summer of 2019. It was only a matter of time until I wouldn’t be able to walk across my apartment without feeling exhausted.
If you’re reading this and thinking I’m the originator of COVID-19, you’ll understand why my doctors were stumped at first. They thought I had asthma, until the inhalers weren’t helping. It wasn’t until they scanned my throat that they discovered something weird: my throat is closing up.
It’s called subglottic stenosis, apparently. It takes root right below your vocal cords, where scar tissue begins to build up and restrict your breathing. It’s a pretty rare disease: it affects 1 in 200,000 people, mostly women. It’s also pretty ruthless: by the time I was diagnosed, I had already lost half the width of my trachea.
Which brings me to the surgery. In a week, a doctor will be operating on the scar tissue so that I can do things beyond sitting on the couch and gasping my way through a walk around the block. And, as the title of this post implies, I’m pretty nervous. Not just because I’ve never been under anesthesia before, but because it’s very likely I’ll have to do it again, and soon. With this disease, going three years between surgeries is considered a success story.
Between this, COVID-19, travel restrictions and the postponement of the Olympic and Paralympic Games, 2020 has been a hell of a heartbreaker. It’s been so hard to go about my daily life, pretending things are normal, smiling through Zoom calls at work, while I put myself on mute to cough yet again. And while I know I’m beyond lucky to be able to work from home and to still be COVID-free, it doesn’t mean this hasn’t taken a significant toll on not only my physical health, but my mental health, as well.
There’s not a happy ending to this story (yet), but I do have some takeaways I want to share.
First, you know your body better than anyone, so please don’t ignore warning signs. I put off seeking treatment for months because I was convinced that I was simply out of shape. Instead of trusting my gut, which was telling me something was seriously wrong, I waited until breathing became an unbearable chore. Don’t be like me.
Second, don’t take your health for granted, and take your health seriously. I’ve never had health problems prior to this, and it was a gift I never realized I had to not have to spend all my mental energy on poring through recent labwork, stressing about medical bills and reading scary patient studies at 1 a.m. Each day you wake up healthy, give thanks for what your body allows you to do, no matter how small. Also, please, please be cautious with COVID-19. Young people are acquiring what could be lifelong disabilities from this virus. Don’t think it can’t happen to you, because it could.
Third, medical bills are expensive. Aside from rent, it will be what I spend the most money on in 2020, even though I have great insurance. Healthcare is a human right, and this disease is undoubtedly underdiagnosed in Black women and women of color, who are historically underinsured and may deal with disparities in healthcare that someone like me doesn’t have to face. Don’t we all deserve quality care that won’t bankrupt us? It’s time to reconsider how the healthcare system in this country is structured and why we spend the most on healthcare within the developed world, yet suffer the worst outcomes. Americans deserve better.
Finally, if you’ve ever had surgery and you survived to read this post: if you have a moment to spare, can you leave me a reassuring comment about your experience? (And if you have horror stories, save them until after, please…). The only thing that’s helped me throughout this process is reading others’ reassurances and the hundred-plus excellent reviews left for my doctor. I’d love to hear your story.
Stay safe, stay healthy, and thank you to everyone who’s reached out with a kind word of support this year. It’s been an absolute nightmare factory, but I’ve been so lucky to have such an incredible support system.
Love to all,