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How to live a passionate life despite your diagnosis

A chronic illness diagnosis may be a frightening and disorienting experience. When that happens, we have two choices: Accept our limitations and let them define us or re-evaluate our passion and pursue new avenues for happiness. Though choosing a new path is never easy, receiving support can make all the difference.

That’s when having someone like Danielle Herrmann on your side can help. She is a medical clinical social worker and behavioral health specialist at Evergreen Health Care. Herrmann says empathetic support from a medical team, family, and friends can make a significant difference for someone living with a chronic illness and medical uncertainty. This partnership can ease the adaptation process as the individual explores and, hopefully, discovers new avenues of joy and fulfillment.

“We help people process feelings such as frustration, isolation and confusion and explore the areas where they still have control,” Herrmann says.

From independence to interdependence

Receiving a diagnosis can be isolating. Learning to value interdependence — in contrast to the independence and individualism American culture typically prizes — is one of the keys to coping, both for patients and their loved ones. Family and friends who are powerless to make the disease go away often feel encouraged when they can help the patient by driving, making meals and by being present in their lives. Their companionship makes a real difference.

“Having someone walk alongside you can have a powerful healing effect,” Herrmann says.

She praises her employer, Evergreen Health Care, with their multidisciplinary team approach to healthcare, which provides unique patient-centered comprehensive support services.

“You don’t just see your primary care provider — you also partner with a nurse care coordinator and a behavioral specialist. It’s a safety net,” she says. “We are privileged to participate in our patient’s lives at a crucial time of change when there is potential for growth and discovering meaning over despair.”

To further explain, Herrmann says that, though people might initially grieve over the loss of physical and/or cognitive abilities, she and her team help them discover substitute activities or new creative outlets. For example, she says one man who was an avid mountain climber, skydiver and scuba diver had to give up those activities after suffering a stroke related to diabetes and hypertension. Instead, with the team’s help, he redirected his love for those sports into something less physically demanding and became an avid golfer.

“Golfing has worked really well for him. He’s still outdoors, and he still has that competitive edge. It also helps him work on his balance,” she says.

Another patient discovered that learning to play a musical instrument helped her manage chronic anxiety and depression and brought new joy into her life.

Evergreen’s own example

Peter Beilenson, M.D., MPH, the CEO and founder of Evergreen Health, an affiliate of Evergreen Health Care that provides health insurance to Marylanders, knows firsthand about living and thriving in the face of a chronic disease diagnosis. In 2007, while writing thank-you notes to donors who had helped him in a congressional bid, he felt his hand cramping, and his handwriting getting smaller. As a physician, he diagnosed himself even before visiting a neurologist. At 47, he had early-onset Parkinson’s disease.

Dr. Beilenson decided early on not to let the disease get in his way. “I’m in healthy denial,” he jokes.

Fortunately, his disease is progressing slowly, but he does have limitations. His right arm is slow and stiff, and he has a tremor in his right hand, making writing and computer work more difficult. His right leg drags a bit.

Though he no longer runs marathons, he exercises every day on an elliptical machine. He runs in 5K races and coaches various sports teams that his five kids play — soccer, lacrosse, basketball, baseball. He’s currently finishing up his 41st coaching season.

Five years into his diagnosis, in 2012, Dr. Beilenson directed his energy toward starting, Evergreen Health. It was hard work, and progress was at first impeded when the Maryland Health Exchange from which he expected to get thousands of patients crashed, giving him just 400. Undeterred, he focused on his goal and grew the business to 40,000 patients while also teaching a course at Johns Hopkins University, writing and publishing a book, and working on a second.

“I’m doing more now than I used to,” he says.

Dr. Beilenson’s can-do attitude is what patients should strive for, according to author and life coach Laura Kronen, who has Type 1 diabetes and writes about dealing with the chronic disease in her book “Too Sweet: The Not-So-Serious Side to Diabetes.”

“Don’t let it define you,” Kronen says of a diagnosis. “You are not your illness.”

A learning experience

Educating yourself is important in managing any disease. Patients who learn about their condition and choices do better in the long run, Herrmann says. Patients should talk to their healthcare team instead of just surfing the internet, where they might read about worst-case scenarios and resign themselves to their fate, she added.

Specialists might not always have the best bedside manner, so it helps to talk to a primary care doctor or nurse, Dr. Beilenson says. “Questions like, ‘Will this affect my job or my mental capacity?’ are scary, but in most cases, the answers are better than you’d think,” he says.

Armed with knowledge, you can rediscover your passion and find new ways to do what is most important in your life.

“Go to your kids’ and grandkids’ birthday parties. Travel if you can. Almost everyone can do some form of exercise,” Dr. Beilenson says. “Put the condition aside and do as much as you can of the activities that give you joy and meaning.”

Those aren’t just words — he walks the talk.

—Teresa Meek for Evergreen Health

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