On her birthright trip to Israel, Amy Kurtz found herself in the middle of a health crisis. She couldn’t catch her breath or keep food down, yet was quickly gaining weight.

“My life shifted from being a young adult at 25, when you’re really figuring out who you are in the world, to being a patient,” Kurtz says. “I was so ill that it really demanded that I be fully invested in figuring out what was wrong.”

After seeing over 35 doctors, Kurtz was diagnosed with late-stage neurological Lyme disease with co-infections. Through her immersion in the health care system, she noticed a gap in the patient experience for those with chronic conditions. While doctors provide care, it’s the patients — already carrying the weight of their condition — who must implement it between visits. 

Today, Kurtz is a chronic illness coach, helping patients manage their care so they can focus on healing. She is also the author of “Kicking Sick: Your Go-To Guide for Thriving with Chronic Health Conditions.” 

“So many people that I’ve worked with over the years need more support,” she says. “Especially when they’re so challenged with their health, and they’re tired and overwhelmed.” 

About 60 percent of Americans live with a chronic disease, according to the Centers for Disease Control and Prevention. Research shows that patients and their caretakers may spend about two hours or more each day managing health-related tasks, such as tracking symptoms and adhering to medication regimens. Even when things are going well, it’s easy to feel overwhelmed or burnt out.

But there are strategies and support systems that can help.

Lighten the mental load of chronic illness

“I see burnout so much,” says Kurtz. “That’s something that people struggle with a lot — not just feeling like they don’t have the energy, but feeling like they don’t have the will to push harder than they are or try any more things.” 

Kurtz encourages simplifying care to reduce stress and to better identify what’s actually helping. Trying everything at once, she notes, makes it hard to know what’s working and what’s not. 

Support systems that help with administrative and logistical tasks like coordinating providers, appointments, and care plans can also make a meaningful difference.

“As a member’s care team grows to address their health needs, they often spend as much time trying to schedule appointments, facilitate conversations between their doctors, and manage their care as they do adhering to the treatment recommended,” says Nicole Cornell, the director of population health and integrated care management for Medicare Advantage at Point32Health, the parent company of Tufts Health Plan. 

Eligible members of Tufts Health Plan can receive no-cost support from a team of care managers. They complete a thorough assessment of an individual’s medical, social, and functional needs and collaborate with community health workers, behavioral health clinicians, pharmacists, nurses, dementia care consultants, and more to make sure those needs are addressed. They help members find providers and communicate with them to ensure timely and effective care.

“When members see that they can once again engage with activities in their life that they value most, the true impact of care management is felt,” Cornell says.

Reduce stress with self-care 

Mayra Marte-Miraz was shocked to be diagnosed with lung cancer at 49 years old. A nonsmoker with no family history of cancer, she has been living with the disease as a chronic condition since 2018.

“There are more folks living longer with lung cancer every day, which is a blessing, but the side effects are daunting,” Marte-Miraz says. For her, fatigue from her current treatment is the most intense side effect. Others she has dealt with include visual deterioration, persistent cough, and difficulty walking.

Kurtz recommends incorporating personal rituals throughout the day, even for as little as three to five minutes, to help reduce the stress of living with a chronic condition and all that comes with it. These are small acts of kindness that help you tune into yourself consistently throughout the day. That might mean meditation, a walk outdoors, or diaphragmatic breathing. Marte-Miraz finds relief through acupuncture, massages, and journaling. “It really gives you an opportunity to write down what you truly are feeling,” she says.

“Self-care is essential for everyone,” says Ashley Crane-Bassett, director of behavioral health at Point32Health. “It is something that needs to be built in as a regular routine to help reduce stress and manage symptoms.” 

Engaging in activities unrelated to health care can also support overall well-being.

“Finding community and engaging in something outside of your health experience is really important,” Kurtz says. She recently started volunteering at an organization that raises money for Lyme disease research and taking piano lessons, while Marte-Miraz discovered working with advocacy organizations helps her feel better.

Talk about it

John Newby met his wife Venus in college. They were lab partners first, then became life partners when Newby proposed three months into dating. Venus worked as a social worker and Newby a physician, and they raised two children together. 

Then, when Venus was 53, she was diagnosed with early-onset dementia. Her condition has since progressed to a point where Newby feeds her, bathes her, and helps her walk. He left his job to become her full-time caregiver.

“I try to stay as upbeat as I can each and every day,” says Newby, author of Brownies and Coffee. “I really, really try my best to do it, but I can tell you, it’s very devastating. It’s very draining. I know that I have to suffer from some depression, but I gear myself up because I keep thinking about, ‘What is she going through?’” 

Although it can feel isolating at times, no one has to manage a chronic condition alone. 

“Having someone to talk to without judgement and to navigate new coping strategies is key,” Crane-Bassett says. “Support systems are a great way to reduce social isolation as well. It can be through support groups, therapy, or regular community involvement.”

Even pets can help. Newby talks to their chocolate lab, Memphis, to process thoughts and feelings he might not share with others. “I can talk to him, and it seems like he understands,” he says.

Ask for help

“If someone is feeling overwhelmed with managing their chronic health condition, they shouldn’t hesitate to ask for help and take full advantage of the resources available to them,” says Cornell.

Tufts Health Plan members have access to a skilled and compassionate care team at no cost. “Our job is to reduce the burden of coordinating care and ensure members have the knowledge and services necessary to reach their health goals,” she says. “Supporting our members is what drives us every day.”

Loved ones can also support those with chronic illness by listening, being present, and asking how they’re doing and what they need. 

“Having a chronic illness shows you who your people are, and it shows you what you’re made of,” Kurtz says. “I didn’t know how strong I could be until I faced such tremendous ongoing adversity in my life, and I see that with patients — that they really see what they’re capable of and find a strength within themselves.”

Tufts Health Plan, a Point32Health company, is a local nonprofit organization that offers health plans for every stage of life. With a commitment to personal service, Tufts Health Plan provides quality coverage and dedicated support to help guide and empower healthier lives.