When I was first diagnosed with chronic fatigue syndrome (CFS) in 1980, I felt relieved to finally have a name for my mysterious illness. Since I’d finished my nursing degree two years earlier, debilitating exhaustion, nausea, and brain fog had become my new normal. I’d been working the third shift in a coronary unit to earn my license as a registered nurse (RN) — but every few weeks, my symptoms would intensify, and I’d have to take time off to recover.
In the years after my diagnosis, I made career decisions based on what my body needed to survive. I took a job as a geriatric and rehabilitation nurse, because the environment was less stressful than the coronary unit. I worked regular hours, and the consistency was good for me, too. One of my positions allowed me to go home over lunch every day and take a nap.
I also struggled to keep up with my growing family. My husband, Bryan, and I had three daughters between 1982 and 1988. During my pregnancies, and for years after our youngest was born, any kind of stressor — positive or negative — would completely take me down.
I describe it like going into a well: On top of the nausea, fatigue, and brain fog that I felt nearly constantly, any stress or change in my life would make me uncontrollably anxious and deeply depressed. I would look at my beautiful family and think, What’s wrong with me? I shouldn’t be feeling this way.
Shortly after our youngest daughter was born, I was also diagnosed with endometriosis, which is common in women with CFS. Between 1990 and 1998, I had four painful surgeries to manage that condition, as well as several trips to the emergency room for my CFS symptoms, which worsened due to the added stress on my body.
Without a treatment plan for my syndrome, doctors mostly tried to manage my symptoms. Occasionally, one would prescribe an antinausea medication, or, more frequently, simply tell me to go home and take a nap. I couldn’t make them understand that I’d wake up more tired than when I’d lain down in the first place.
With no tests to confirm my symptoms, I often felt like I was suffering from an invisible illness: I looked fine, and every test came back negative, but what I was experiencing in my body was dramatically different.
Only after I found a doctor who cared enough to really listen to me was I able to climb out of my well. And today, after years of trial and error, I’ve adopted a routine that works for me and designed a career that allows me to pass on the lessons I’ve learned.
The Big Crash
On Christmas Day 2002, I had what I call my Big Crash. I was preparing dinner for the family when I started experiencing stroke-like symptoms. My face and hands went numb, and my vision blurred. My anxiety was off the charts — I’ve never felt so helpless. I ended up back in the emergency room.
That’s how I met Dr. Klauss, the internist who I still see today. He believed me when I described how I was feeling. Even though he didn’t have an answer, he didn’t treat me like a crazy lady who just needed a nap. He knew I wasn’t well and wanted to help.
Dr. Klauss prescribed an antidepressant to balance my serotonin levels. Because I’d been having chest pain — which increased my anxiety — Dr. Klauss referred me to a cardiologist, who diagnosed me with heart palpitations and atrial fibrillation. My doctors agreed that the best thing I could do was start moving my body.
I spent the next three years building my stamina. It took me months to be able to walk down the driveway and back. After that, my next target was to get to the end of the street, and then around the block. Over time, I grew strong enough to tackle my next big goal: To really strengthen my heart, I needed to sweat.
That’s when I joined an all-women’s gym in Bloomington, Ill. I had to start with lower-intensity routines and build up gradually, but I kept getting stronger. For the first time in a long while, I felt like I had some control over my health. I still had my bad days, but it felt good to be doing something positive for my body.
I got to know a lot of the senior women at the gym by taking the lower-intensity classes. So, when the owners decided to add a Zumba Gold class — a modified version of dance-fitness for older adults — they asked me if I’d consider teaching it.
A New Beat
I acquired my Zumba Gold license in 2009 and started teaching my first classes. Right away, I knew I was fulfilling a need in the community.
My students were around my age — 50 and older — and they couldn’t handle classes geared toward younger clientele. Drawing on my background in geriatrics and rehab, I built a low-impact aerobics class specifically designed for older adults.
Because I had to be prepared as the instructor, my classes made me stronger, too. I had to build up slowly, but the positive energy I felt from teaching was enough to keep me pushing through the challenges.
I also fell in love with the fun and excitement of Zumba. Even if I felt drained at the beginning of class, as soon as I cued up the music and started moving with my students, I found that I could often dance through it.
Still, my CFS was a part of me. I had to cancel classes occasionally or tweak my schedule to allow time for rest and recovery. My No. 1 rule for myself and my students has always been “listen to your body.” That’s a lesson my CFS taught me, and now it’s a gift I can give to my students.
After about a year, I realized there had to be more active older adults who needed this kind of experience. I wanted to be able to do more, and my students did, too.
So in January 2010, I launched my own studio, which gave me the space to expand my class offerings and my clientele as the demand grew.
Eleven years later, I’m offering about two dozen classes per week in multiple locations. I’ve acquired six more licenses, so I can teach people with a wide range of fitness levels, ages, and abilities.
With every new license, I discovered a new group of people who needed adaptive fitness. I teach some higher-impact, more-intense classes for students who need more challenge, but I also have a Zumba Gold Chair class for Alzheimer’s and memory-support patients, and several low-intensity classes for people who are postsurgical or dealing with injuries. Most of them can’t work out in the traditional sense, but they all still need to move, and they all love the socialization and the positive energy.
Some students have been with me from the early days, and they’re a daily reminder of why I’m so passionate about this work: I get to witness the positive effects that movement, fitness, and fun have provided for them.
I’m much stronger, too, and better able to handle the tough days with CFS flares, because I have this purpose to propel me forward.
I’m also putting my nursing degree to good use: Many of my students have existing conditions or need movement modifications. Most of them have never had the opportunity to customize a routine, and I think they’re comfortable with me because I’m an RN — and because I’ve had my share of health struggles. They know I’m one of them, and I’m an example of how powerful movement as medicine can be.
Lucy’s Top 3 Success Strategies
- Build a support system. Finding a doctor who listened to her and believed her was a turning point in Lucy’s care. The love and support of her family and friends helped her to persevere.
- Listen to your body. Lucy’s CFS requires her to be intentional about rest and recovery. Building her stamina slowly and balancing high- and low-intensity classes allow her to now teach a full slate of classes each week.
- Find your passion. “I’m there for my students, and they’re there for me,” Lucy explains. “My business wouldn’t have become what it is without them.”
This originally appeared as “Movement as Medicine” in the June 2020 print issue of Experience Life.