Why I Started Running Despite My Rare Lung Disease

One of the symptoms of lymphangioleiomyomatosis (LAM), my rare lung disease, is shortness of breath. I discovered just how short of breath I can get when I started walking with my neighbor in the morning. Turns out I could handle the walking just fine, but add a conversation to it, and I sounded like a freight train. Frankly, it was embarrassing and uncomfortable, so I avoided it.

Months later, a friend invited me to walk the Atlanta Beltline, a paved pathway in the heart of the city with a beautiful cityscape view. I enjoyed the company and the view so much that I didn’t realize I had huffed and puffed my way through a 4-mile walk. So, I went back by myself the next day, and the day after that. Over the next couple of weeks, I started noticing all the runners that would pass me as I walked. Pretty soon, I felt bold enough to give it a try myself, despite being short of breath.

I probably ran a 1/4 mile that first time on the Beltline before I stopped. If the walk and talk combo had me sounding like a freight train, then the running was more like a turbo jet engine. Holy tornado! Could everyone hear me? Why did I think I could run like everyone else here? Could everyone see me hunched over, gasping for air when I barely ran? I felt so incredibly inadequate and ashamed. Needless to say, I walked the rest of the way. During that walk of shame back home, anxiety gave way to tears, and the sound of my breathing felt amplified. I couldn’t get home fast enough.

Hearing myself breathe heavily was a painful reminder of LAM, and all the feelings of helplessness and uncertainty about a future living with a progressive and incurable disease that go along with it. Then, something unexpected happened when I got home. I felt a little lighter. That hour and a half long, 4-mile stretch, gave me a chance to think about life after my diagnosis, and opened up this frequency in my mind that I hadn’t tuned into before. I thought about how isolating it is to have a rare disease no one knows about, and how angry I am at the universe. I thought about how the uncertainty of it all just makes me freeze some days, and how every little ache or pain frightens me because it feels like another lung collapse.

I also thought about how fortunate I am to be able to walk four miles on a trail nearby with incredible views of the city, and that I have great health insurance to cover my quarterly visits to the LAM clinic at Emory Hospital, which is only 10 minutes away. I remembered that I have an incredibly supportive and loving husband, and two wonderful children, and that I wasn’t diagnosed before having kids because the decision to have kids knowing that pregnancy causes progression in LAM would have been too much to bear.

I woke up the next day and felt this need to go out and walk again. This time though, I went prepared with an arm band carrying my iPhone and headphones so I didn’t have to hear myself breathe. My walks eventually led to running, very slowly I should add, and over a few months, I built up to running four miles, several times a week. Those months of running brought me such a sense of clarity in my life, and it’s because I finally gave honest expression to the full spectrum of my feelings about living with a rare lung disease.

I still run on occasion and often sound like a turbo jet engine, gasp for air and am deeply uncomfortable at times. I keep going because in the face of a disease that’s progressive, I’ve come to terms that my days of running may be numbered.  With all the thoughts I have yet to deconstruct in my mind, I’m going to run while I can.

We want to hear your story. Become a Mighty contributor here.

Getty Images photo via lzf

Find this story helpful? Share it with someone you care about.

Related to Lymphangioleiomyomatosis

Rear view of two female friends resting in park

Why It's Hard to Share Your Story With Illness

I discovered pretty quickly that I wasn’t equipped to handle the reaction I received after sharing my diagnosis of lymphangioleiomyomatosis (LAM) with a few people. I was still processing the news myself about this rare and incurable lung disease and didn’t really have time to decide who to share my diagnosis with and how much detail to [...]
Abstract watercolor hand drawn portrait illustration of girl in profile filled with mix of blue violet and brown oil paints with green stains on black background

How I Learned to Still My Mind When Worrying About My Illness

I participated in a study conducted at the National Institute of Health (NIH) a couple of years ago to determine the disease process of lymphangioleiomyomatosis (LAM), and during my stay, I had a chaplain visit me in my room. She was a lovely, middle-aged woman with short hair whose voice was as soothing as her overall [...]
woman sitting alone feeling lonely and thinking missing someone looking out at water lake

The Day I was Diagnosed With a Rare Lung Disease

I was unofficially diagnosed with a very rare lung disease, lymphangioleiomyomatosis (LAM) in mid-May a few years ago at a pulmonologist’s office in Atlanta. It all started with a pesky cough that just wouldn’t go away, so I visited my primary care doctor. He wasn’t available that day, but his RN on staff was and she [...]

When I Finally Allowed Myself Feel the Emotions of Living With a Rare Lung Disease

I went out to lunch with a friend some time ago, and over kale salads and mineral water she asked, “So, how are you doing?” I took that as my invitation to lament when I think she may have been looking for something a little more uplifting. I responded with how isolating it’s been living [...]