One Foot in Front of the Other: A Journey With SSc-ILD

By: Ronna Bowles

Four years ago, at age 35, I was an active mom, wife, small business owner, and someone who enjoyed exercising. Crazy about the enjoying exercise thing, I know. I was also struggling with chronic migraines, and a growing sense that something wasn’t right.

A doctor’s curiosity ultimately changed the course of my life. What began as a conversation about migraines with a Neurologist, led to an autoimmune workup, a diagnosis of scleroderma, and the discovery that it had caused interstitial lung disease (ILD), a form of pulmonary fibrosis.

Suddenly, questions I never expected to ask became part of my life:

• What can we do?

• How will my body respond to treatment?

• How long do I have? 

And then came the hardest part, telling my husband and my elementary-school-aged children that I had a serious lung disease plus scleroderma. At the time, there were only a few treatment options available to me, some of them carrying significant risks. We didn’t know how my body would respond to treatment, and we didn’t even know how long I could safely continue living at 7,500 ft, where there is roughly 25% less oxygen available for each breath. 

Facing the Diagnosis Head On 

My doctors told me my lung function was a “use it or lose it” situation. That message pushed me to become an active participant in my own care, and eventually, an advocate for others.

After taking time to process my diagnosis, and getting professional mental health support, I made a conscious decision: I was going to do things that scared me.

One of those things was signing up for running races.

I know what you might be thinking: Running? Really? I had never considered myself a “runner.” I enjoyed exercising, but I didn't run every day or identify as a runner. Still, I thought, how hard could it be? I found out pretty quickly after my first race.

I started with shorter distances and, over the next few years, slowly worked my way toward longer races. Eventually, I decided I wanted to attempt something that felt almost impossible: a 25-kilometer (15.5-mile) race at an elevation of 8,000–9,000 feet.

I trained carefully, listening to my body and pushing myself only to the threshold it would allow. I knew there were limits I couldn't ignore. But I also wanted to find out what was possible.

On race day, I was nervous and excited. About halfway through, the doubts started creeping in. What was I thinking? Can I really do this? 

I thought about the community of patients who had supported me and the people living with ILD who were facing their own difficult challenges. I wasn't running alone. I felt like I was carrying all of them with me. With each step I told myself that my diagnosis doesn't get to decide everything about my future.

About three-quarters of the way through the race, I hit a large uphill section, and I was struggling. Really struggling. So I did the only thing I could do. I put one foot in front of the other. And then another. And another.

I also know I wouldn't have made it to the finish without my husband. When I called him for help, he came. He joined me on the course and helped me finish the race. He literally took some of the weight off my shoulders so I could accomplish the goal I had set for myself.

If I could tell anyone at any stage of their ILD journey one thing, it would be that you are not alone. There is a community of people, including me, who are cheering for you, supporting you, and believing in you as you figure out what comes next.

You may not know what your finish line looks like yet. You may have to take it one step at a time. And sometimes, you may need someone to come alongside you and help carry the weight.

That's okay.

Do the things that scare you. Take the next step. And know that we're cheering for you all the way. You've got this. 

September is Pulmonary Fibrosis Awareness Month, with ILD Day on September 16. This month, we’re sharing stories like Ronna’s to help others recognize the disease, understand the patient experience, and find hope in the journeys of those who are facing it head on.

BIO:

Ronna lives in Estes Park, Colorado with her husband and two children. When she's not running her small business, longarm quilting for others, you can find Ronna with a book or outside enjoying what nature offers in the Rocky Mountains.

IG handle: @scleroderma.life

Patient Voices Disclaimer: The views and experiences shared in this blog reflect the personal perspectives of patients and are not medical advice. Before pursuing any treatment, therapy, medication, or other idea discussed here, please talk with your physician or healthcare provider to determine what’s right for you.