Resilience in Motion

Lindsay Guentzel was in the best shape of her life in early 2023. After spending her teens and 20s dealing with serious ups and downs in her self-confidence and motivation, Guentzel had finally found a sustainable rhythm with her health and fitness in her 30s.

“I worked hard to come to terms with why I struggled with disordered eating and my body image,” reflects Guentzel, now 39. “I figured out a way to make movement a part of my life without it feeling taxing, like it was a job, or like always a struggle to get to the gym.”

She was specifically hooked on GTX and Alpha classes at her local Life Time clubs in Plymouth and New Hope, Minn. An avid participant since 2017, she was drawn to the classes’ personable instructors, the accessible formats for all fitness levels, and, most importantly, the community.

She decided to put her fitness to the test during a hiking trip to Sedona, Ariz., in January 2023, with her partner. She could never have anticipated, however, that an incident on a particularly tough trail would change her life as she knew it.

Guentzel hiking in Sedona, Ariz., in January 2023. She considers this her “last healthy photo.”

An Unexpected Change of Course

During the 4.6-mile hike, Guentzel was pricked on her leg by cactus spines. She didn’t notice the spines until the end of the hike and also didn’t give the incident much thought as she pulled them out of her skin at the car.

But when she woke up the next morning, her face was swollen to the point of being unrecognizable, and a rash and infection — which she initially thought was an allergic reaction — had developed on her leg where the spines had pricked her skin. “I had no idea what was happening to me,” Guentzel recalls.

It was the start of what she describes as the “worst two months of my life.” “Every time I would go to the doctor, they’d do blood work and get me in for a referral to see the next person. And it just kept happening — I kept getting passed along.”

On top of the continued extreme facial swelling, Guentzel had trouble moving her body due to severe muscle inflammation, and she wasn’t sleeping well due to the stress of not having answers.

After three emergency room visits, including one in Phoenix, Ariz., during her trip, and nearly 20 doctors’ appointments, Guentzel finally met with a dermatology resident who, upon seeing her elevated liver enzymes, advocated for her to get the blood tests that ultimately led to her diagnosis.

“My formal diagnosis is dermatomyositis associated with antisynthetase syndrome,” she says. “It’s an autoimmune disease where my body is attacking my muscles, causing muscle deterioration and weakness.”

Dermatomyositis is a form of myositis — chronic muscle inflammation caused by the immune system attacking the muscles throughout the body. Dermatomyositis, which affects both the skin and the muscles, is a rare disease that affects about 1 in every 100,000 people and more often occurs in women than men. Its exact cause is unknown but genetic and environmental factors can play a role — in Guentzel’s case, the pricks from the cactus spines triggered an infection. As with other types of myositis, there is no known cause or cure for dermatomyositis.

Investment in Self

Even as she was navigating the emotional turmoil and uncertainty, Guentzel did her best to maintain her health and fitness routine. “I was still going to the club, even though my face was horrendous and my fitness ability was different — the amount of weight I could lift and the things I could do on the treadmill changed,” she says. “I was fearing the worst.”

She initially felt relief when she finally had a diagnosis and some clarity on what she was dealing with. “Then comes the whole side of having to learn everything about the disease and this new life and how I’m going to handle it,” she says. “It’s a full-time job that I didn’t ask for, and it’s a lot.”

Yet she considers herself luckier than most in the rare disease community: On average, it can take seven to eight years for a formal diagnosis, with the potential of misdiagnoses along the way.

Since her diagnosis in 2023, Guentzel has had more than 350 doctor appointments and spent more than 39 days in the hospital. She often cycles between a 15-pound muscle loss and gain — losing muscle when she encounters a flare-up, building that muscle back up when it subsides, and then losing it again when there’s another flare-up.

She never could have predicted that her active lifestyle would provide a slight cushion for her chronic illness. “I was able to overcome the first wave of muscle inflammation and muscle loss because of the shape I was in,” says Guentzel. “The muscle deterioration didn’t significantly start until long after I had been diagnosed because my disease had more muscle to sink its teeth into.

“I didn’t know that I was spending all this time preparing myself for this pretty unimaginable future,” she says. “In classes, you always hear trainers say, ‘You’re not doing this for yourself now, you’re doing this for your future self.’ I am living that. I’m living what it means to invest in your body and take care of yourself.”

Navigating a New Normal

As Guentzel’s relationship with her body has evolved, so has her relationship with being physically active. She exercises now for muscle maintenance and has found that staying active helps with her joint and muscle pain.

Being physically active has empowered Guentzel in a whole new way. “I’m not the same person I was before I got sick, but knowing what I’ve gone through these last two years and still trying my best to go to class is pretty incredible.”

Heather King, Dynamic Personal Trainer and coach at Life Time in Plymouth, Minn., has worked closely with Guentzel in GTX and Alpha classes and witnessed her fitness evolution since she joined Life Time in 2017. King has seen Guentzel’s efforts to both build a consistent routine and navigate physical activity post-diagnosis.

Guentzel shares that King has subtle methods to encourage her to push herself a little harder during workouts. “Before I got sick, I would tease Heather about how she was always pushing me to lift heavier,” Guentzel laughs. “She’d come up behind me and just leave weights next to me as a hint.”

Looking back, Guentzel realizes that symptoms of her condition — like longer post-workout recovery time — were showing three to four months before the hike; she had brushed them off as signs of aging.

King also recalls noticing discrete physical signals that were peculiar but not enough to make the alarm bells go off. “Lindsay would foam roll and get severe bruising,” says King. “It was just one of those things we didn’t think much of because at that point we thought she was totally fine.”

Once Guentzel received her diagnosis, King became one of her most trusted supporters.  “Heather checked in on me, made sure I was doing OK, and always offered up modifications during class if I needed them,” Guentzels says.

She recalls the first day she couldn’t do a pushup anymore. “My arms gave out,” she explains. “As I was laying there on the mat, I cried, and then I cried again after class. But to have a community of people who are just so happy to see you there, it makes showing up to class and getting through those emotions so much easier — it helped me let go of the shame and frustration.

“It would be really easy for people to look at me and be like, ‘Oh, she’s not working hard,’” she says. “But to have this relationship with the instructors and for them to see what I’ve gone through and to continue to be really supportive is awesome.”

For Dynamic Personal Trainers and coaches at Life Time, the goal is always to meet members where they are in their unique fitness journeys, King says. This means fitness experiences may appear in many different ways.

“With Lindsay, it was about thinking outside the box,” King says. “If we were working on glutes, but hinging motions weren’t working for her, we’d figure out what she can do. Or instead of using heavy weights, maybe we need to focus on bodyweight or banded exercises instead.”

King says she approaches every member relationship with a “glass half full” mindset: “Even when you’re diagnosed with something that affects your life in so many ways, there will still always be things you can do.”

Looking Forward

Guentzel is currently undergoing a clinical trial that uses CAR T-cell therapy treatment — an immunotherapy often used for treating cancer; the goal is to bring her disease into remission.

Despite the tolls of the protocol, she still makes it to her regular Alpha and GTX classes when she can — and she takes advantage of other Life Time amenities, too. “Having a muscle disease means I take more opportunities for self-care like sitting in the sauna and the hot tub,” she says. “I used to think if I wasn’t exhausted after a hard workout, it didn’t count. Now I look at going to the club as a whole new opportunity to take care of myself.”

Over the last two years, Guentzel has only missed 2 percent of her medical appointments, compared to the clinical average of 30 to 40 percent, she says.

Guentzel acknowledges that she used to take her body for granted. “I’m getting this crash course on what my body is capable of, and it’s incredibly empowering,” she says. “I hope that everyone gets that moment of ‘aha’ — but without the rare and incurable disease.”

And she stresses the important of giving yourself grace. “Being kind to yourself and being proud of yourself for everything you’re accomplishing is so important — and when I say everything, I mean everything,” she adds. “Getting out of bed or making a doctor’s appointment — all the small tasks that we as humans look past. Celebrate that. Make note of that.”

“Becoming comfortable using mobility aids has been a huge part of my journey,” says Guentzel. “Learning more about dynamic disabilities has been incredibly helpful in that acceptance.”

7 Tips for Maintaining an Exercise Routine During a Challenging Time

If you’re working to maintain an exercise routine while navigating health or other life challenges, King offers the following tips.

1. Keep showing up for yourself. “Just as when you aren’t injured or sick, remember that there are going to be good days and bad days,” says King. “Just keep showing up and doing what you can on the given day.”

2. Be flexible. “Have a plan but also be willing to pivot to listen to your body. Something is always better than nothing,” she adds.

3. Think glass half full. “Instead of focusing on what you can’t do, focus on what you can do,” King says. “Lindsay, for example, could still do some upper-body and core workouts, which kept the momentum going for her physical health. Think of exercise and movement as things that will make you feel better and improve your day, not as chores that need to be completed.”

4. Choose consistency over intensity. “Knowing that each day will be different, use rate of perceived exertion — how hard you think you’re pushing yourself during a workout — as a measure of success versus your weight load or other metrics.”

5. Make sure you’re fueling your body. “People often deprioritize nutrition when their exercise decreases, but the body needs calories and nutrients to heal,” she explains. “Make sure you’re giving your body the proper sustenance it needs.”

6. Build a strong support system. “The more people you have cheering you on, the more successful you will be,” says King. “Even after her diagnosis, Lindsay continued to attend GTX classes for the people and community to open herself up to support from others.”

7. Seek professional guidance. “Make sure to research your condition and get professional medical advice so you do not overexert or potentially harm your body,” she advises. “Communicate any physical concerns to your trainer so they can be prepared with the best modifications for you.”