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AASP Newsletter - November 2019

Chronic Illness in Elite Athletes: An Unwelcome Passenger on the Road to Excellence

Theresa Bianco
Genevieve Lamarche

Theresa Bianco, PhD & Genevieve Lamarche, BSc, Varsity Wrestler
Concordia University, Montreal, Canada

Throughout our training as sport psychologists and mental performance consultants, we come to learn a great deal about the various challenges that athletes face in their pursuit of excellence. One topic often discussed is the adverse impact of sport injury and the strategies that we as practitioners can call upon to help athletes navigate the psychological hurdles present throughout recovery and the return to sport. A related, but often overlooked topic, is that of chronic illness – which can be equally if not more challenging for athletes. Unlike injuries, which tend to be readily identifiable, visible, and often have well-defined endpoints, chronic illnesses are typically difficult to diagnose, not readily visible, and persist indefinitely with often unpredictable debilitating effects. Thus, they present a constant challenge that must be managed long-term. All of this can take its toll on athletes, leaving them especially vulnerable to feelings of frustration and hopelessness. This is especially true for high-performance athletes, who are heavily invested in their sport.   

For the past few years, I have been working with an elite athlete, Genevieve Lamarche, who is battling a chronic illness. Genevieve is a 24-year-old elite wrestler with ambitions of representing Canada internationally. She trains two to three times per day, six days a week, year-round – all the while pursuing an undergraduate degree in athletic therapy. As if all of this were not challenging enough, Genevieve must also contend with the unpredictability and intrusiveness of having Crohn’s disease – a chronic inflammatory disease of the intestines, which at its worst can cause debilitating abdominal pain that can last for days. During these flare-ups, Genevieve cannot compete and must stop training altogether. When symptoms subside, she must ease back into training very slowly. She finds herself constantly trying to balance catching up with not triggering another symptom flare-up (which is exacerbated by stress). These are the physical challenges, and along with them come the psychological challenges with which most athletes struggle – specifically, that of remaining optimistic and continuing to believe in the dream. 

Genevieve wanted to tell her story in order to shed light on the unique challenges associated with chronic illness, and to provide insight as to how we, as sport psychology and mental performance consultants, may be of assistance to these athletes. Here is Genevieve’s story – in her own words.

My Battle with Crohn’s Disease – by Genevieve Lamarche

Symptoms Without a Name

Ever since I could remember, I always had stomach problems; I just attributed them to overeating and stress. One of my earliest childhood memories was sitting in the restroom praying to God to make the pain go away. I often missed school because of incredibly painful stomach cramps and was eventually diagnosed with irritable bowel syndrome (IBS). I was told to eat more fiber and decrease my stress, and that there was not much else that could be done about it. So, I lived with my symptoms, trying to avoid foods that seemed to trigger them. I wrestled all throughout high school and noticed that my symptoms would worsen before each competition, but I never let it stop me. I was quite successful throughout my high school wrestling career. In my first year, I competed in a higher age category and won a provincial gold medal, and in my senior year, I won a provincial bronze medal. 

After high school, I was recruited by Concordia University’s varsity wrestling team and in 2013 moved from the small town of Timmins, Ontario, to the big metropolis of Montreal, Quebec. This was a big change for me, with a lot of adjustments, and the pace was intense. I was 18, living on my own, going to university and training twice a day, six days per week. My symptoms persisted, but I did not have time to worry about them. I just soldiered on.

In December 2015, while I was back home visiting my family for the holidays, I started to experience very painful abdominal cramps. They would last several hours during which nothing seemed to alleviate the pain, and then suddenly the pain would stop. But the relief was always short-lived and within less than 24 hours, the pain would return, only stronger, and lasting longer, sometimes waking me from my sleep. I continued to train as best as I could so I wouldn’t fall behind; I needed to be ready for upcoming tournaments. Looking back, I realize that I was in denial of the severity of my symptoms, simply attributing it to IBS – for which I was already told there was not much to do.

Finally, the Correct Diagnosis.

By the time I returned to Montreal, the pain had become so unbearable it brought me to tears and often caused me to vomit. The turning point was when my roommate found me curled up on the bathroom floor, unable to move because of the pain. I was hospitalized and given morphine to ease the pain. An abdomen scan revealed that I had an abscess the size of a large orange in my intestines. I was told that had I been struck in the stomach (which can easily happen in wrestling), the abscess could have burst and sent me into septic shock, possibly killing me. The final diagnosis was severe fistulizing Crohn’s disease. I was in the hospital for almost two weeks and lost 20lbs. Upon my release, I was prescribed 10 days of rest, forcing me to drop a class and step away from wrestling for some time. I was crushed.

Managing My Illness

Two months later, I was started on an aggressive treatment of bi-weekly injections of Humira, an immunosuppressive medication. I was also put on a strict low residue diet, which consisted of eating “easy to digest” foods such as refined white bread, low fiber vegetables, melons, and meat. This meant cutting out almost all fruits and vegetables, and instead consuming processed and refined foods. Even though I was following the prescribed diet and medication, my symptoms continued to worsen and my injections had to be increased to once weekly.

Juggling medical appointments and coping with symptoms made it increasingly difficult to keep up in school and to get back to training. I was struggling. In addition, I developed pernicious anemia which occurs when the intestines do not properly absorb vitamin B12. This made it even harder to return to sports. All of this was very difficult to process at first because I feared falling behind my peers – my doctors had told me it would take months or years to figure out the best diet and medication to stabilize my symptoms. On top of being faced with a new lifelong disease, I could no longer do the sport that I loved, with the required intensity. This illness took me away from my friends on the wrestling team, my support group. It also took away an aspect of my life that brought me great joy and made me feel accomplished and competent. I felt that my dream of representing Canada internationally was slipping away from me and I was heartbroken. I cried a lot!!

Taking My Life Back

The treatment was successful, and slowly I started to feel well enough to begin training – be it at lower intensities and for short amounts of time, 15-20 minutes to start with.  At first, I tried to maintain a schedule similar to the other wrestlers, but I quickly came to realize that this would not be possible – my body just could not handle it. I needed time to fully recover from the abscess as well as bring my body back to an optimal level of health – and unfortunately, the stress of training was impeding this. I was never more discouraged in my life. Again, I cried a lot!

For a long time after my diagnosis, I felt depressed and hopeless. But, little by little, I was able to increase my training time and intensity, and now I am back to training almost as much as my teammates. I have had three major Crohn’s-related flare ups in the past three years. I live with symptoms occurring regularly, but I have come a long way in learning to listen to and work with my body.  I try to maintain a good balance between taking care of myself in order to keep my illness in check and training as much as I can. I can now train twice per day on most days and I feel that my overall health is improving. Bit by bit, I am feeling more and more like myself again.

How My Mental Performance Consultant Helped

A few months after my diagnosis, I was struggling with this immense sadness I felt from not being able to train, and the discouragement from all the lingering symptoms of my illness. One of my wrestling coaches suggested I seek the counsel of a mental performance consultant. And am I ever glad I did, as this was a big stepping stone to my recovery.

It was so helpful to have someone to talk to – someone with whom to share all my struggles. We talked about everything: the difficulty in finding a sport nutritionist who understood the illness; my struggles with the medication and its side effects, the symptoms of the illness; and the lifestyle changes I had to make, especially with regards to my training. Through our work together, I came to an acceptance of my illness. I came to appreciate that instead of battling Crohn’s, it would be much better for me to learn to work with it, to modify what I was doing in order to create an optimal healing environment and allow the symptoms to subside. Crohn’s was here to stay, so I had to learn how to live with this unwelcome guest. For example, instead of being frustrated about the restricted diet I had to adopt, I told myself that I was going to eat nutritious foods that were better suited for my body so the Crohn’s would be “happy” and have less “tantrums.” The happier Crohn’s was, the more energy I would have for my sport.

We also talked a lot about quality versus quantity of training, and training smart.  Because my energy was very limited, I was not always able to attend training, and even when I did attend, I was not always able to complete the full wrestling practices. Not being able to tolerate a high volume of training with minimal rest like my teammates was a difficult reality to overcome. Shifting the focus away from missing so many practices to making the most of my time when I was able to practice was instrumental in keeping me motivated. When I did attend training, I found ways to make the most of my time on the mat or in the gym. Shifting my focus away from what I could not do toward what I could do was important because it allowed me to feel like I was doing something useful and making progress.

I also did a lot of visualization while watching my teammates practice – imagining myself doing the same things they were doing. I also analyzed what they were doing so that I could learn tricks that would help with my own wrestling.

I would say that the greatest benefit of working with a mental performance consultant is that it helped me realize that I do have control over my life and that I am not defined by my illness. At first, I felt helpless, but I then came to realize that I do have control – over my diet, my medication, how I train, and managing my stress. When I show up to practice now, I feel like me: a strong, confident wrestler; not a patient weakened by Crohn’s. I have resolved that I will not let this disease define who I am or stop me from achieving my goals.

How My Coach Helped

Having a coach support me through this process has also been extremely important to my recovery. One of the hardest things to cope with as an athlete with a chronic illness is the feeling that you are letting your coach down by not being able to train as much as the others. Feelings of being a slacker, falling behind, and seeing your dreams slip your grasp creep in, and support from the coaches is crucial to not let these thoughts consume you.

One of my coaches came to my first appointment with my gastroenterologist to support me and learn more about the condition. It was important for my coach to understand that even though I had a chronic illness, I still wanted to compete and achieve the same dreams I had prior to my diagnosis. I was very fortunate that my coaches were willing to learn more about my condition and find ways to modify my training that would allow me to continue to improve and at the same time stay as healthy as possible.

When I first started to train again, I was doing very short practices and it was a lot of trial and error for months, as I was figuring out what I could and could not do. I slowly got better and was able to do more. When I came back to training every day, I soon felt very fatigued and had more symptoms. One of my coaches suggested taking an extra rest day in the middle of the training week until I was well enough to do a full week. This gave me the opportunity to rest in order to have higher quality practices throughout the week and it also made me feel understood and that I did not have to worry about falling behind.

My coach reassured me that everyone has their own path and that we have to figure out what is best for me. Even with that reassurance, I still found that I hesitated in telling my coach when I was not feeling well, and instead tried to push through my symptoms. I didn’t want to be seen as a slacker. Of course, this is the worst thing to do. And I don’t do that anymore. A day of rest is much better than weeks off because of a flare-up!

It was important for me to always feel welcome at training and to not be treated differently (other than the modified training) than the other athletes. I still wanted to be challenged and pushed in order to help me rebuild my confidence and feel competent. My coach was really good at helping me focus on what I could control, and made me realize that my success in sport would not be determined by my illness, but by me – I am the one who will decide how far I will go.

Insights from Genevieve’s Story

Although every athlete’s experience with illness will be unique and determined by a host of factors, there are some global lessons to be drawn from this story that can be useful to mental performance consultants. In terms of challenges, the major ones associated with illness include:

  • Realizing you have an illness – onset is typically gradual and not acute
  • Struggling to get an accurate diagnosis and proper care
  • Coming to terms with having a chronic condition, with all its limitations
  • Finding the right balance between pushing through and making things worse 
  • Having a limitation that is not visible (like an injury) 
  • Worrying others (coaches & teammates) will misinterpret limitations as lack of effort
  • Recurrence of symptoms and the uncertainty about the future they entail

Practitioners can play an important role in supporting athletes with chronic illnesses and help orient them toward athletic success. Strategies used should be aimed at:

  • Helping athletes come to terms with their illness and its implications
  • Encouraging athletes to work with rather than against their illness
  • Encouraging athletes to seek assistance and support from their coaches
  • Shifting the focus away from limitations and toward capabilities
  • Planning for symptom flare-ups and other motivational setbacks
  • Regaining control and keeping the dream alive

Final Thoughts

Chronic illnesses pose specific challenges for athletes and their coaches as well, who are likely to know very little about how to best support their ill athletes. Genevieve was fortunate in that her coach sought to learn as much as possible about her condition, and this helped her tremendously. This may not always be the case, however. In such instances, the intervention work of the sport psychologist or mental performance consultant may need to extend beyond the athlete to include the coach. Bringing an allied medical professional on board might also be required. Indeed, in an ideal scenario, all parties would work together to help develop a plan for athletic success.

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