Coping With a Chronic Illness
Coming to terms with a chronic illness is a trying process that takes a lot of time, energy and effort. It's a journey that can take you through a range of emotions including grief, anger, relief (at finally knowing what is wrong), fear and hope and potentially force you to take stock of your life, the people in it and the world around you.
The Power of Perception
Several scientific studies have shed light on what many have long suspected: a positive outlook helps people living with chronic illnesses adapt both physically and psychologically more quickly and effectively. This 'positiveness' has less to do with a cheery disposition and more about:
- control or a sense of having power over personal experience;
- commitment or a strong involvement in life's activities; and
- challenge seeing change as a chance to overcome, learn and grow.
Possessing a strong sense of these three elements affects your attitude and how you adjust to handling the challenges of a chronic ailment. Of course, one of the first and most important things to accept is the roller coaster of emotions you and those close to you will experience. No matter how positive your attitude, there will be moments of darkness and emotional upheaval. Though each person is unique and responds to chronic illness differently, the suggestions below can enhance your sense of control, commitment and challenge.
Ask for help. While it may seem obvious, it's often difficult to reach out to others for assistance. You may see it as a sign of weakness or worry about being a 'burden' to those around. But ask yourself this: if a loved one was ill and needed your help would you hesitate? Many loved ones may want to assist you, but don't know how. Voicing your specific needs could help you get physical, social and psychological support and lets friends and relatives who may feel powerless to help know exactly what they can do to lend a hand.
Communicate. The diagnosis may leave you feeling like you've been stranded on a desert island with no one to truly understand your situation. Resist the temptation to pull away and instead express your feelings and ideas to others. Talking about your emotions your fears, anger, hopes, dreams etc. with loved ones can help you unleash bottled up stress and let friends and relatives better understand your emotional journey. Open communication encourages loved ones to share in your thought process and express their own feelings which they may be afraid or uncomfortable to voice.
Focus on what you can do. Instead of fixating on the things you're no longer physically able to do (e.g. "I can't run or do sports with my son anymore") try to phrase your thoughts to highlight your abilities ("I can still go for short walks and spend time with my son"). Concentrating on your strengths and using positive self-talk will help you maintain your self-confidence during a time when it's needed most.
Explore new ways to relieve tension. If physical limitations mean you can no longer enjoy certain hobbies or physical activities then why not challenge yourself by trying something new? From painting to poetry, swimming to meditation; seize the opportunity to discover a new passion. Whether physical or creative, delving into new pursuits provides an outlet for stress and gives you the chance to learn and grow.
Seek out support. Meet for coffee with a close friend, join a support group of people living with the same illness or turn to a counsellor for information and coping strategies. Creating a network of support helps you handle the ups and downs of living with your ailment and reinforces that you're not alone.
Arm yourself with knowledge. Seek out as much information as you can about your condition from doctors, medical journals, reputable Web sites and support groups. The better you understand your condition, the more in control you'll feel coping with the illness and discussing treatment options with your physician. Knowledge is, truly, power.
Live in the here and now. While it's natural to long for the healthier days of the past, living there can interfere with your ability to adapt to your condition and impede your enjoyment of today. Savour daily delights whether it's a nice chat with a neighbour, a compliment from a colleague or a homemade card from your child or extended family.
Set realistic goals. Track progress and create a sense of accomplishment by creating both short and long-term goals for yourself. Make sure, however, these markers acknowledge the physical and emotional realities of your condition. Perhaps you're not able to run a marathon, but you can participate in a 5km walk or you can't possibly finish the 20 things on your list today, but you can get through five. Break goals down into manageable chunks and set yourself up for success by ensuring they're attainable.
Explore your spiritual side. Whether you attend religious services, belong to a meditation group, or volunteer to help those less fortunate, a number of studies suggest that finding greater meaning and purpose in your life can help you physically and emotionally adapt to the challenges of living with a chronic illness.
Loss of control, over your body and its ability, is a major hurdle of living with a chronic illness. But while you may not have control over the way the illness develops and affects your body, you do have control over how you handle these challenges. Learning to cope is an ongoing effort; one that recognizes the difficulties of living with a chronic illness, adjusts to new circumstances, and celebrates the successes along the way.
Supporting a Loved One with a Chronic Illness
Study after study reveals that people who have a chronic ailment adjust better when they have a network of people behind them. All the more reason why it's important for family and friends to focus on their own needs, as well as those of their loved one. Here are a few tips that may help:
Reflecting and adapting. Take a time out for some introspection and openly assess your reaction. Is your natural instinct to dive in and help, retreat or feel angry at the medical staff? Identify and acknowledge these responses, even if they're irrational. You may try to avoid your loved one, for example, because you feel helpless to change the situation. The more honest you are with yourself, the easier it will be to respond in the most supportive, helpful way possible.
Bridging the gap with communication. Don't know what to say or do around your loved one? Tell them. Creating a faade that everything is 'normal' blocks the lines of communication and may unintentionally belittle your loved one's experience. Tell your friend or relative you're worried or that you're not sure how to help, and use open communication. He or she will appreciate your honesty.
Putting yourself in your loved one's shoes. Helping and supporting a chronically ill friend or relative can, at times, become trying. Stress, discomfort or pain brought on by the ailment may make your loved one irritable or unresponsive. When these moments arise, remain patient and calm and remind yourself of the taxing struggle (both physically and mentally) your loved one is enduring.
Acknowledging successes and challenges. Accept there will be good days and bad, whether it's overcoming a round of treatment, taking a step towards rehabilitation, or sharing in their grief when stumbling blocks arise.
Finding support. Just because your friend or relative has the condition, doesn't mean you have to go it alone. Share your fears, stresses and triumphs and connect with others in similar situations. Join an organization that provides support and information to caregivers or family members of people affected by a chronic illness. Some groups deal with chronic illness in general, while others address the concerns and challenges of specific conditions.
And remember: your presence and support are the most meaningful gifts you can give to a loved one living with a chronic illness.