Deciding Whether to Keep Diagnosis Private or Share
- U.S. Olympic swimmer Katie Ledecky has revealed in her newly published memoir why she initially chose not to go public with her diagnosis Postural orthostatic tachycardia syndrome (POTS).
- Some people battling a disease or cancer are willing to open up about their experiences as much as they can, while others prefer to keep it to themselves. SurvivorNet experts say both approaches and everything in between are valid. Possible reasons why cancer patients may choose to keep their diagnosis private are to maintain a sense of privacy and control and avoid pity, [like Ledecky], stigma, and discrimination.
- Patients may also be motivated to keep their diagnoses private because they want to reclaim a sense of normalcy and protect their loved ones.
- If you find yourself wrestling with your emotions because of a diagnosis, remember you don’t have to go it alone. Your support group filled with loved ones are there to help you on your journey.
Olympic swimmer Katie Ledecky, 27, made an unbelievable comeback after keeping her blood circulation disorder private to avoid any distractions—not only is she one of the oldest swimmers to compete for the U.S., she also holds the world record for the 800- and 1,500-meter freestyle. Over the weekend, at the 2024 Paris Olympics, impressively won her fourth consecutive gold medal in the the 800-meter freestyle, something no other women in the sport has done. Speaking to
NBC6 after the big win, Ledecky said, "I think here in Paris, the one that meant the most to me was the 800 free. Just being able to four-peat in that event was pretty special. "So, yeah, each one has a different story to it, different meaning, but I'm really happy with how all of my events went this week in Paris." Ledecky, who has won a total of nine Olympic gold medals and recently published a memoir called "Just Add Water: My Swimming Life," is truly remarkable as she's risen to the top while living with a blood circulation disorder known as Postural orthostatic tachycardia syndrome (POTS), something she previously kept quiet from the public.
The 27-year-old Stanford University graduate and 21-fold World Champion, said in her newly published memoir, a New York Times Bestseller, that she kept the diagnosis hidden as she "wasn't eager to become a distraction or be distracted myself." Ledecky said in her 256-page book, according to
E! News , that leading up to her diagnosis, she experienced symptoms of lightheadedness and feeling "extremely hot" at a team dinner at the World Aquatics Championships in Russia about nine years ago. She initially dismissed her what she was feeling as being tired, until she was training for the 2016 Olympics in Rio de Janeiro and felt "weird." "I was swimming okay. But I was super inconsistent. I would have a couple of good practices, and then I would have a day or two when I had absolutely no energy. Some days I couldn’t walk around without dizziness. I remember wrapping practice and struggling to get back to the locker room," she explains in her book, as per E! News. "Every swimmer has peaks and valleys in training, but to be so strung out? My desire to work hard was there. I just had no juice. I kept wondering, Am I sick. And if so, with what?" Her coach at the time was the one who advised her to see specialist at Johns Hopkins—ultimately leading to her POTS diagnosis.
Ledecky explained further, "Because I have POTS, I pool blood in the vessels below my heart when I stand. My body then releases extra norepinephrine or epinephrine, which adds additional stressors on my heart, making it beat faster. Which, in turn, bring on dizziness, fainting and exhaustion “The good news was that I could treat my POTS nutritionally. I needed to up my sodium intake and increase my hydration. Studies also show that reclined aerobic exercise, such as swimming and strengthening your core can provide relief. Which is kind of funny. What are the odds that the prescriptive exercise for my particular disease would be…more swimming?"
RELATED: SurvivorNetTV Presents: Breaking the Cycle The Power of Mindset As for why she chose to keep her diagnosis private, Ledecky admitted she "didn’t want something quote/unquote ‘wrong’ with me to become the narrative around Rio or Team USA.
She continued, "I wasn’t eager to become a distraction or to be distracted myself. I simply wanted to treat my condition as best I could and get back to going hard in the pool. "Gradually, following doctor’s orders, I started feeling better." We're delighted to hear Ledecky is content with her choice to hold off on telling others and that she's now handling the condition well. Not only is she managing her condition well, after her successful swim matches in Paris, she has been chosen to be one of Team USA's flag bearers at the Olympics Closing Ceremony this coming weekend.
She told
Self earlier this summer, "It feels good. It’s not like I was ever hiding it; it just never felt like it was something I needed to share. I’ve had it under control completely. "I really just had to add salt to my diet and wear compression gear. Whenever I get sick and when I go to hot environments, I need to be especially careful to stay on top of my salt and hydration." Ledecky added, "I thought it was important to tell my whole story, and that was a part of my story, especially leading up to the 2016 Olympics. It was a new thing that I had to acknowledge and be aware of, something that was always in the back of my mind. "I wanted to share how that’s impacted me at different points and how I’ve been able to push through that and take control of that part and live a healthy lifestyle."
Resilient learning to overcome any obstacle Now Ledecky is urging others "to trust the health professionals you’re working with." She explained, "I did that and was able to figure out what helped me pretty quickly. I understand that for some people, it’s a longer process. But it’s important to stay patient and work with the people around you and make sure you have good people watching out for you, encouraging you. "For instance, my mom is always reminding me to stay on my salt and hydration."
Understand Postural Orthostatic Tachycardia Syndrome (POTS)
Postural orthostatic tachycardia syndrome (POTS), according to
John Hopkins Medicine , is a disorder of the autonomic nervous system and a very common diagnosis, as the condition affects approximately one to three million Americans. POTS is described as a blood circulation disorder characterized by the following factors:
- Specific symptoms that occur often when standing up.
- An increase in heart rate from a horizontal to a standing position "of at least 30 beats per minute in adults, or at least 40 beats per minute in adolescents, measured during the first 10 minutes of standing."
John Hopkins explains, "The symptoms of POTS include but are not limited to lightheadedness (occasionally with fainting), difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea. "Researchers don’t fully understand the causes of POTS, but it is more common in women than men and is more likely to develop in adolescents and young adults." This condition is diagnosed by a 10-minute standing test or a head-up tilt table test, and people living with this can usually resolve their symptoms through combinations of diet, physical therapy, medicine, and other treatments. Symptoms of POTS are different depending on the person, but may include:
- extreme fatigue
- lightheadedness when sitting or standing for a long period of time
- difficulty focusing
- heart palpitations
- nausea or vomiting
- headaches
- sweating excessively
Additionally, John Hopkins explains that symptoms may worsen in a hot environment and a lack of fluid and salt intake.
When Is It Okay to Share Your Diagnosis?
Some people battling a disease or cancer are open to sharing their experiences as much as they can, while others prefer to keep it to themselves or close loved ones. SurvivorNet experts say both approaches and everything in between, are valid. “Patients who have just been diagnosed with cancer sometimes wonder how they are going to handle the diagnosis of the cancer in social situations,” psychiatrist Dr. Lori Plutchik explains.
Helping Patients Cope with a Cancer Diagnosis
Asking questions like "How much information should they share and with whom should they share the information?” are things Plutchik says patients take into consideration. Dr. Plutchik adds, “There is no one right way to handle this diagnosis. People should do what feels right to them.” A cancer journey can last months to years, which means cancer warriors may be experiencing a lot of uncertainty until they fully understand where their health stands. This uncertainty can influence when a cancer patient is ready to share their diagnosis, Dr. Plutchik further explained. Dr. Plutchik stresses that those close to a person going through cancer should be respectful of their wishes when it comes to disclosing their diagnosis and seeking support.
Adjusting to Life After a Diagnosis
A cancer diagnosis, or even a POTS diagnosis like Katie Ledecky, will undoubtedly upend your life in some form, but learning to cope with the onset of changes can make the adjustment easier to bear. You may notice your emotions and feelings fluctuating, ranging from high anxiety to depression. Experiencing a range of emotions and feelings is completely normal. Dr. Plutchik says your emotions are likely to be fluid in the first few days, weeks, and possibly even months after a diagnosis. Cancer patients are encouraged to build a support system of people they trust to help manage these emotions during this sensitive period. Mental health professionals are also very helpful in managing emotions during the cancer journey. Cancer and treatment can have an impact on your physical appearance. Chemotherapy, for example, often causes hair loss, which can drastically alter how you view yourself. Licensed clinical psychologist
Dr. Marianna Strongin explained to SurvivorNet, “Cancer changes who you are both physically and emotionally.” A study
published in Frontiers in Psychology questioned how self-esteem should be considered in cancer patients. Researchers noted cancer patients’ framing of their diagnosis and how they cope with their diagnosis and subsequent treatment impacts their self-esteem throughout their cancer journeys. “Adaptive adjustment strategies (positive reframing, use of emotional support, active coping, acceptance, and planning) in breast cancer patients were associated with high self-esteem. Social support also appears to be strongly related to self-esteem,” the study says. Dr. Strongin suggests looking at the part or parts of your body impacted by the cancer or cancer treatment to help you cope with body changes. She recommends creating a regular practice of accepting your body image because it enables you to accept your cancer journey emotionally and physically. “As you allow yourself to spend more time looking at all of you, you will begin having a new relationship with your body. It may not happen immediately, but you can start honoring and thanking your new body with time. “Just because the treatment is behind you, the emotional recovery can take longer,” Dr. Strongin adds. If you find yourself wrestling with your emotions because of a diagnosis, remember you don’t have to go it alone. Your support group is filled with loved ones who are there to help you on your journey.
Flourish a story of empowerment, strength, & yoga Contributing: SurvivorNet Staff 
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