I was sitting in my office a few years ago with a high level athlete as she described her recent experiences with continued health concerns.  She was facing another flare up of symptoms, which prompted feelings of isolation, uncertainty, and frustration regarding her season and the need to dial back her training.  “I feel like I’ve lost a huge part of myself,” she said, as she reflected back on the last decade of competition.  Her current reality no longer matched the trajectory she set for herself just a few years prior.

I have seen several clients over the years who have faced complex and chronic health concerns: Diabetes, Ehlers Danlos Syndrome, autoimmune conditions, asthma, Meniere’s Disease, bone infections, Post-Concussive Syndrome, and most recently, metal poisoning.  Though these health concerns are not visible to the naked eye, they become central to an athlete’s life and often define an athlete’s ability to train and compete regardless of an athlete’s motivation or desires. 

For the majority of athletes, their athletic identity is a central pillar of life.  Many coordinate work, eat, sleep, and training schedules around sport.  When one’s athletic identity is challenged, athletes may begin to question who they are.  As a psychologist and a researcher who is always eager to grow and learn, I have searched far and wide over the years for research and resources designed to support athletes with complex health concerns.  Unfortunately, the field of sport psychology is lacking in this area, leaving many athletes in the community feeling even more isolated and uncertain about next steps.

Our Research on Athletic Identity and Complex Health Concerns

After seeing the need for information regarding complex health concerns and athletic identity, I did what many researchers do and launched a research initiative to get this important conversation started. Over the past few months, 47 athletes with complex and/or chronic health concerns volunteered their time and energy to share their experiences.  The majority of our participants were white females.  They had a variety of health concerns including but not limited to Lupus, MS, PCOS, Ehlers Danlos Syndrome, Hashimoto’s Disease, IBS, and Meniere’s disease.  They represented 25 sports, including but not limited to weightlifting, cycling, running, snowboarding, and martial arts.

We asked our participants one question: In what ways has your identity as an athlete changed as a result of your chronic and/or complex health condition? What is different about what you know or understand, what you do, and how you feel?

Our team collected over 100 responses from the athletes, which included a breadth of feelings and experiences.  After our team went through and cleaned up some of the responses, we sent the 100 responses to the same participants and asked them to sort the responses into piles based on similarity and to name the categories.  We then compiled all of the data, which revealed six common experiences of athletes in this community.  Here is what we found…

Six Common Experiences of Athletes with Complex Health Concerns

The first theme that appeared in our research, and the one that was rated as most salient to our participants, included increased physical awareness. Our participants shared that chronic illness has made them more aware of what is happening in their bodies.  They shared that they “actually take days off” and have “come to understand that there are good days and bad days.”  They also reflected that they have learned to listen to their bodies. 

Second, our participants reported that they have more health knowledge now than ever before, which serves them in training and competing.  One participant reflected, “I know that some advice that helps other people won’t apply to me.”  Others shared that their health has an impact on their ability to train consistently, so they’ve had to learn to accept that inconsistent training may be their norm.  Another athlete noted that they don’t recover from workouts as quickly as others, which has served as pivotal knowledge for their training and competition routines.

The athletes also reported many experiences that signified increased resilience.  One athlete stated, “I now understand how important it is to be my own advocate” when speaking to healthcare providers.  Gratitude was a central feeling in this section.  Athletes shared that they are grateful for the moments where they feel like their old self; they also feel grateful to train and compete.  This section also included reflections that the athletes have learned to overcome big challenges.  As one participant shared, “I have learned that my health is everything.”

The fourth category of experiences reflected the need for personal modifications in training and competition.  Athletes reported that they now spend more time figuring out how to fuel, train, and strengthen their bodies now when compared to pre-diagnosis.  They also shared that they recognize that there are times it’s too risky for them to compete or train.

Though many of the categories above can arguably serve as positive adjustments, the athletes also shared feelings of frustration and uncertainty.  Such feelings of frustration often revolved around a lack of clear solutions or treatments to resolve concerns.  Others expressed frustration with their body during a flare-up and reflected that it feels as though their body has let them down.  Participants also described worrying about their potential limitations as an athlete.

Finally, athletes reported feelings of isolation and loss.  As one participant shared, “it’s still pretty isolating and distressing at times to try and balance my athletic goals with what’s actually realistic for my body.”  Another athlete described that the world feels very isolating when they experience a flare of symptoms.  It was not uncommon for athletes to reflect on past accomplishments and experience feelings of loss.  As one athlete stated, “I feel like my body will never be what it once was or should be.”

Implications for Athletes

There are several takeaways from this research, thanks to the athletes who so willingly shared their experiences with us.  Themes of resilience and self awareness were clear; many of the quotes spoke to the importance of listening to the self, meeting (and accepting!) their body where it was, and making personal adjustments as needed to stay engaged in sport.  These are important lessons for all athletes!

Though it was never explicitly stated, our findings also speak to the power of self-compassion within this community. The athletes shared feelings of gratitude and acceptance for their bodies and their health, while also naming feelings of isolation, frustration, and loss.  This didactic is an important one because it demonstrated how powerful “both/and” language can be here.  Both things can be true.  Athletes with complex health concerns can feel grateful and isolated.  They may practice acceptance while also feeling frustration or loss.

Implications for Healthcare Providers and Coaches

There is one very clear learning opportunity here for healthcare providers and coaches.  Of the 100 items, the one rated as most salient was “I now understand how important it is to be my own advocate/ally.”  Additionally, the items with the lowest ratings were about giving up athletic dreams and letting go of one’s athletic identity.  In short, our research suggests athletes with complex health concerns are persistent, adaptive, and unlikely to let go of their athletic identity when faced with health concerns.  That said, they may feel dismissed or overlooked by healthcare providers when seeking explanations for health concerns.  When they advocate for themselves, it is important for coaches and providers to listen, trust, and help them adapt their training in a way that will support their health.

Concluding Thoughts

Ultimately, it is vital to provide an environment for all athletes to be athletes.  It is my hope that this research provides healthcare providers and coaches with an increased understanding and awareness of the experiences of their athletes who continue to train and compete in the midst of complex health concerns.