Strategies for Managing Your Illness
Living with a chronic illness or disability presents many challenges. There are so many strong emotions to cope with, and so many life decisions to make. We often need to make adjustments to our daily routines, our homes, and our careers. We must deal with reactions from family members, friends and society at large. We have to take stock of our finances and navigate the maze of government systems.
We may also face physical challenges such as sleeping problems and nutritional issues. Add to that having to deal with chronic pain, medication, doctors and other health-care providers, and life can seem overwhelming.
The key is to take charge by taking positive steps. Essentially, you should try to manage your chronic condition in much the same way that you would a business.
“Whenever people are contemplating change in their life, there are well-researched stages that people go through,” says Judy McKague, a physiotherapist with the Arthritis Society of Kitchener in Ontario. “Self-management requires readiness for change; those people that can work through these stages will be more successful in making the changes. Sometimes consultation with a health-care professional will assist people in moving forward through the stages of change.”
You can wallow in self-pity or try to make the best of a bad situation by trying something different. Working with professionals and becoming more proactive in your own health care is a good way to go. “In order for someone to take charge of their chronic illness, education is of primary importance. Learning about what is going on inside their body, what is known about that process and how to ameliorate it is the first step,” says McKague. Fortunately, she adds, there is growing recognition in our health-care system of the benefits of the self-management approach.
Michael Sausser, 47, of Palm Springs, Calif., says, “It took me a long time until I was able to ‘self-manage’ my chronic illness. I was too busy being angry and depressed about it, especially when I realized that I was never going to get better.”
Sausser started his self-management by getting as much information as he could about his physical condition from his doctors and health-care workers. “Once I understood my illness and disability and its progression, I began listening to my own body. I worry less about the appointment that I had a month ago and deal with what I am feeling in the moment. I no longer let my illness consume me. I am moving forward regardless of it. ”
Write down your goals. Choose one and ask: What do I want to achieve? What are alternative ways that I might accomplish my goal?
Whatever your goal is, don’t assume it isn’t possible or that options don’t exist – thoroughly investigate, and ask for help from your family, friends and health-care professionals. Community organizations may be able to offer help.
“The two most effective strategies I’ve observed from leading the Stanford Chronic Disease Self-Management program are problem-solving and goal-setting,” says Shelley Murphy, registered dietitian and co-leader of the Take Charge! program at the Guelph Community Health Centre in Ontario. “There are many different tools, such as communication skills, healthy eating, exercise and stress management, that help support and direct problem-solving and goal-setting. These are the foundation to move knowledge into action. Furthermore, having good support in place, like family, friends and health professionals, is an important way to keep on track with managing our health.”
CREATE AN ACTION PLAN
For each goal, decide on a short-term plan. You need to decide how much you are going to do, when you are going to do it, and how many times. For example:
“This week, my goal is to go to the pool for water therapy (what). I am going to go for 30 minutes (how long) after breakfast (when) twice this week (how many times).”
If you’re having trouble achieving a goal, don’t give up immediately – explore what you can do, and ask others for advice. Try these steps: – Identify the problem. – List ideas that may resolve the issue.
– Select an idea.
– Try the idea.
– Assess the results.
– If one idea doesn’t work, try another
– Utilize other resources – call on friends, family, health-care professionals or organizations.
Identify the problem: Let’s say you want to eat more healthfully, but you’re not sure what dietary changes to make. Also, due to your level of fatigue, you are not eating enough and therefore not getting enough nutritional value from what you do eat.
List ideas: Talk to your doctor or a dietitian to learn how to meet your specific nutritional needs. (Find a dietitian by visiting the Dietitians of Canada website at dietitians.ca. In Ontario, you can speak to a dietitian for free by calling 1-877-510-5102. In B.C., call toll-free, 811.) Bring a list of questions, take notes and ask about resources. To prepare healthful food while respecting your limited energy, you could get your teenage kids more involved, plan ahead by “batch cooking” soups and sauces and freezing them, or make smoothies with protein and brown rice powders.
Select an idea: Next weekend when the kids are home, you are going to cook.
Try the idea: Together, you make a pot of spaghetti sauce, chicken soup and a mixed vegetable casserole. The food is divided into smaller containers and frozen.
Assess the results: The frozen meals are handy when you are home alone and are not up to cooking. Also, the kids realize the importance of helping out with food preparation and become more active on a day-to-day basis.
Utilize other resources: If this plan does not work, explore other options, such as occasionally ordering take-out or inquiring about Meals on Wheels in your area. Get a copy of Canada’s Food Guide to Healthy Eating (healthcanada.gc.ca/foodguide) to self-manage the nutrients that you need to stay healthy. (Also, turn to page 25 for ideas about prep-free cooking.)
Reward yourself for reaching your goals – you deserve it! It could be as simple as lighting an aromatherapy candle and listening to your favourite music. Enjoy a cup of tea, have a bubble bath or go out for coffee with friends. Give yourself a pat on the back.
You will not always achieve your goals right away. Acknowledge the setbacks and move on – this is part of self-managing a chronic condition. “Life is unpredictable and ever-changing. We all have ups and downs, and self-management is a journey rather than an end point,” says Murphy. “I believe everyone has the capacity to self-manage…There are times when we are better self-managers than others. Keeping a positive outlook, setting goals for ourselves and finding solutions to our challenges will contribute to weathering life’s ups and downs a little better.”
Gloria Troyer is a freelance writer who lives in Guelph, Ont. She wrote an article about creating a medical resumé titled “Paging Dr. You” for the Fall 2009 issue of Abilities.