Being diagnosed with a condition that won’t go away means adjusting to a new reality
By Wendy Haaf
Nearly half of Canadians aged 51 to 60 live with one to three “high-impact” chronic conditions, according to Statistics Canada, and that proportion rises with age. In a society in which we talk about fighting and beating illnesses, how are you supposed to cope if you’re diagnosed with a health issue you’ll have to live with for the rest of your days? How do you adapt to your new reality?
We asked three experts—a writer and advocate who’s been living with rheumatoid arthritis since childhood and two clinical psychologists specializing in health and rehabilitation. Here’s what they had to say.
Anger, frustration, fear, and grief are normal responses to the news.
‘‘It’s normal to be sad; it’s normal to be anxious and frustrated when you’ve been given information about a new diagnosis,” says Michael J. Coons, a clinical health and rehabilitation psychologist with the Health Collaborative group in Burlington, ON, and an adjunct professor of psychology at York University. Coons is also one of the co-authors of the chapter on mental health in Diabetes Canada’s 2018 Clinical Practice Guidelines for the Prevention and Management of Diabetes in Canada.
After all, change is stressful. You may have to adapt to new limitations and adopt new lifestyle habits and drop others to manage your health issue. Then there’s the way you think about yourself. While everyone is different, for some people, “You almost have to grieve the death of who you were and start to get to know the new person that you are now,” says Toronto author and advocate Lene Andersen. And when you experience a challenge—such as a flare-up of symptoms—grief “can rear its ugly little head again, even when you thought you’d reached acceptance,” she adds.
Education is one of the keys to success.
‘‘Learning about your disease and how it’s managed is important, so that you have accurate information about what you need to do and what you can expect,” Coons says. Up-to-date information can also dispel any out-of-date notions you might have about your condition, perhaps as a result of a relative’s long-ago poor experience with the condition.
Instruction—whether one-on-one or in a group—can help you learn important coping skills, such as breathing patterns that help ease shortness of breath during a COPD flare-up. However, trying to digest all of the necessary knowledge may leave you feeling overwhelmed, at least at first. Consequently, it’s a great idea to ask your doctor to refer you to a program focused on your condition, where you can get education and support. Organizations such as the Arthritis Society and Diabetes Canada may be able to connect you with classes and professionals, such as diabetes educators, in your area.
If your partner or a close family member can attend information sessions or classes with you, so much the better. “When you have a chronic illness, the whole family has a chronic illness,” Andersen says. “How the whole family does things changes.”
Talking to a mental-health professional can be helpful.
‘‘I think that any diagnosis of chronic illness should come with an automatic referral to a social worker who can help you identify resources in your community,” Andersen says, “as well as provide a few sessions just to help you get over the hump of assimilating all the information and the emotional changes.”
This is another reason to connect with condition-specific programs, since they often incorporate such components. Your local hospital or health unit, or the Canadian Mental Health Association may also be able to help connect you with a mental-health professional in your area. (You can find an online course on mental health and well-being at arthritis.ca by clicking on “Support and Education” and then “Online Learning.”)
Feeling overwhelmed is common among people with chronic conditions, and depression is roughly twice as prevalent in this group as it is in the general population; both can hinder your medical progress. Researchers have learned that a high level of perceived burden and distress associated with managing Type 2 diabetes has a greater negative impact on blood-sugar control than does depression, Coons notes. So if you’re struggling, ask your care provider at your next appointment if you can focus on one achievable goal per visit. And remember: Gaining confidence at any skill takes both time and practise.
Finding a new balance may require a change in thinking.
‘‘I sometimes see people slipping into a kind of black-and-white, all-or-nothing thinking—as in, ‘If I can’t do what I used to be able to do, then there’s no point in doing anything at all,’” says Peter Prior, a clinical psychologist with the Cardiac Rehabilitation and Secondary Prevention program at St. Joseph’s Health Care London, in Ontario. “One of the challenges is to navigate between surrendering and doing nothing, and expecting to be able to do everything you used to be able to do. Finding that middle ground can be challenging, but it’s not the same as surrendering.” Health professionals who may be able to help you in this process include occupational therapists, who can offer tips on how to pace your activities if you have symptoms such as fatigue and low energy.
Consider “demoting” your doctor.
No matter how wonderful your doctor is, he or she isn’t the person who has to live with and manage your condition each and every day. For that reason, Andersen recommends moving into the driver’s seat when it comes to your care and treating your doctor as a highly qualified expert consultant.
“It’s important to find a doctor who’s comfortable with that level of teamwork, who understands that he or she recommends but you decide,” she says. (Andersen suggests keeping a record of your condition to take with you to each visit; that way, you’ll be less likely to minimize how you’re feeling or to exaggerate it because you’re having a bad day.)
If you think you’d benefit from a particular kind of care—such as physiotherapy to help improve your mobility and reduce your pain, or advice from a registered dietitian on adjusting your eating plan to improve your blood-sugar control—speak up. “You need a team of medical professionals to treat a chronic illness,” Andersen says, “and you’re the person who builds that team and tells the team what you need. Don’t expect that people will guess—ask for it.”
Surrounding yourself with supportive people is good medicine.
Your relationships with health-care providers, friends, family members, and other loved ones are more crucial now than ever before. “We’ve learned that having support really buffers us from many of life’s challenges, diagnosis of chronic disease included,” Coons says. “We’ve also learned that people who don’t have access to those kinds of supports might be more at risk for difficulties.”
Our relationships with friends and loved ones also play a key role in our sense of personal meaning and purpose in life, which are linked with better health and life satisfaction, Prior says.
Maintaining some of these relationships can require some flexibility and a little extra work, such as finding new activities you can do with a friend. For instance, if you and Sue usually meet for drinks but you’ve cut out alcohol to manage your blood sugar, maybe you can grab coffee instead. “It’s important to work at friendships and social engagement as best as one can, and not simply let them go because of new limitations,” Prior stresses.
Andersen suggests that if you’re lucky enough to have friends who offer to help when you need it, you should have a list of a few specific, practical tasks—such as driving you to medical appointments—on hand. “Allowing people to help during a difficult situation can be a real act of generosity,” she says, “because it allows them to show you love.”
In addition, Andersen advocates what she calls “finding your tribe”—connecting with a community of people who understand what you’re going through because they’ve lived through it, too. Options range from in-person support groups through hospital programs and non-profit groups such as the Arthritis Society to online forums and individual connections made via Facebook pages and Twitter hashtags. “There’s a real sense of peace that comes with feeling known in that profound way that someone else who doesn’t have your condition just can’t provide,” Andersen says. What’s more, people who share your condition can often share valuable tips and suggestions you might not find elsewhere.
Healthy habits are more essential than ever.
‘‘Taking care of your body and health as best as you can is extremely important for both your physical and mental health,” Prior stresses. For example, regular exercise—even just short periods of walking—reduces the risk for depression. (A specialized program or an experienced physiotherapist can help you work within any limitations caused by your condition.) And in addition to being a pivotal component of managing many chronic health problems, a healthy diet benefits brain health and may help ward off depression, as well.
Andersen recommends staying on top of routine preventive care and screening tests, too, since they frequently fall by the wayside when you’re dealing with an ongoing health issue.
“The simple fact is that if your general health is as good as it can be, then your chronic illness management is going to be better” than it otherwise would be, Andersen says. And whereas someone without a chronic condition may be able to ignore bodily needs such as adequate sleep and healthy food, often that’s an option you don’t have when living with a chronic health problem. “Your body needs more help from you when you have a chronic condition,” Andersen explains. “You have to find a way to live your life—and live it well.”