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5 steps to living well with a chronic illness
We tend to think of illness as something temporary and curable, like strep throat. But some conditions don’t clear up with time and the right medication. About half of all American adults have at least one chronic medical condition ― that is, a long-lasting health issue that requires ongoing medical attention, such as diabetes, arthritis, depression, heart disease or cancer.
If you’ve received a diagnosis of chronic illness, you may be frightened and confused. Know that while your daily routine may change, it will soon become routine again. Patients call this “the new normal.”
The key to managing any condition it is to become your own advocate: Make better health your passion and cause, and get comfortable speaking up so your needs are heard. “No matter how good your physicians are, no one is going to be as connected to your needs as you the patient,” says Bradley Artel, MD, FACC, FASE, a cardiologist and Aetna medical director.
Know that you’re allowed to push for more information. Ask your doctor to explain something a second time “in plain English.” Get a second opinion if you feel you’re not getting the right care.
Below, patients and doctors share strategies for navigating the health care system and managing the emotional and lifestyle changes that come with a chronic condition.
Use the buddy system
Find a trusted family member or friend who’s willing to be your co-advocate. Preferably choose someone with experience managing a health condition or dealing with doctors. Have them come to appointments to act as another set of eyes and ears ― to ask questions, take notes and remind you of symptoms or side effects you should share. (If you need to go solo, ask your physician if you can record the visit on your cell phone so you can review it later.)
Marshall Cummings, 67, was dealing with Type 2 diabetes and hypertension when he was diagnosed with a form of liver cancer. He was understandably overwhelmed. Then Aetna contacted him about a new community-based care program, where nurses meet with members in their homes and at their doctor’s office to develop personalized care plans.
Marshall was paired with Nicole Taylor, a nurse case manager who helped him plan healthy meals, join a nearby gym and arrange transportation to physical therapy. “Being a nurse, Nicole could break down what the doctors were saying,” Marshall says. “She’d explain things to me in depth and tell me what I could do about it. She made me more at ease with my conditions.”
Marshall was lucky to have a dedicated nurse, but even a friend can nudge you to stand up for yourself, remind you to practice healthy habits, and help you figure out next steps.
Read up on your condition
Continue to learn about your medical condition outside the doctor’s office. Try to familiarize yourself with common terms and the organs involved in your condition. (If you have diabetes, for instance, learn about the pancreas and kidneys.) Investigate your treatment options, different medications and important diet changes. The knowledge you gain will make it easier for you to talk with your doctor and give you peace of mind.
Just be careful to get your facts from trusted sources. It can be hard to distinguish science-backed information from sales pitches and opinion. You can factcheck suspicious posts on sites like HealthNewsReview.org and Snopes.com. To ensure your information is reliable, follow these tips:
- Limit online research to government and nonprofit websites, such as…
- National Library of Medicine’s MedlinePlus - http://www.nlm.nih.gov/medlineplus/
- US Department of Health and Human Services’ Healthfinder - http://www.healthfinder.gov
- Centers for Disease Control and Prevention - https://www.cdc.gov/
- American Academy of Family Physicians - https://familydoctor.org/
- Medscape - https://www.medscape.com/today
- Enroll in a self-management education (SME) program. Through in-person classes or self-study toolkits, these programs teach you skills and strategies to communicate with doctors, cope with symptoms, fight fatigue, manage medications and more. To locate a program near you, go to https://www.cdc.gov/learnmorefeelbetter/sme/index.htm.
- Get familiar with your medications. Dr. Artel recommends that you know your medication names and dosages as well as you know your children’s names and ages. Marshall Cummings got similar advice from Nicole Taylor ― and his diligence paid off. When Marshal’'s pharmacy sent him the wrong drug with a very similar name, he caught the mistake on his own. Read more about Nicole Taylor’s work as a care manager in her own words.
Keep stress in check
Try to remember that in many cases, millions of people around the country live with your condition. And most of those who take good care of themselves live well and thrive. Although fear and anxiety are natural, learning to let go of negativity will strengthen your emotional and physical health.
“It’s easy to assume the worst,” acknowledges Dr. Artel, who remembers when he was diagnosed with Type 1 diabetes at age 31. At the time, his mind flashed back to a former patient whose untreated diabetes had left him disabled. “I confessed my fears to my own physician,” Dr. Artel recalls. “He reminded me that this was someone who had refused to seek medical help for a long time. And if I did everything possible to stay on top of my diabetes, the risk of complications was very, very low.”
Doing something soothing for yourself can help get your head straight. When Marshall is worried, he goes to the gym. “After I work out, I feel calm,” he says. “I can relax, have something to eat, talk to friends…I can be myself again.”
Besides exercise, some great ways to manage stress are listening to uplifting music, trying guided meditations and experimenting with aromatherapy oils. (Read more tips on boosting your mood to improve your health). Positive affirmations, or inspirational phrases you can repeat out loud and post around your home, may also help. For some people, affirmations increase feelings of well-being and open the mind to lifestyle changes.
Find somebody to lean on
After a diagnosis, it helps to have someone to talk to when you’re feeling down or overwhelmed. That can be a loved one or a professional. “Sure, I have friends,” Marshall says. “But I always felt, I’m a man, and a man has to be strong. I didn’t realize I needed someone to talk to until I met Nicole, my case manager.” Other resources for emotional support include churches, community centers and private Facebook groups affiliated with an organization devoted to your condition.
“I didn’t realize I needed someone to talk to until I met my case manager, Nicole.”
Remember to share your successes as well as your challenges. Getting encouragement when you’re doing well can help you stay motivated. Nicole says, “Even when Marshall didn’t need it, I told him, ‘Hey, you're doing a great job,’ or ‘I'm here,’ or ‘We're going to do this together. You're not alone.’”
Take baby steps to better habits
Lifestyle changes can help keep your condition under control, reduce symptoms and raise your spirits. Just take it easy. “When we take on too much in the beginning, we tend to get overwhelmed and stop,” Nicole says. “It’s important to practice healthy habits in a daily, step by step way.” For instance, instead of telling yourself you’re going to lose 30 pounds in three months, try losing a pound a week. Or aim for an even smaller goal, and skip vending machine snacks for one week.
Bottom line: When coping with a chronic illness, worry less about what you can’t change and focus on what you can. Eventually, you may discover you’re living a healthier life than ever before.
About the author
Hallie Levine is an award-winning health journalist whose work has been featured in Time, Newsweek, Consumer Reports and Prevention, among others. She lives in Connecticut with her three children, Johanna, 10, Teddy, 8, and Geoffrey, 7, and her two labrador retrievers, Ivry and Wiggins.