The challenge of living with chronic illness isn’t always apparent when you first receive a diagnosis. This is just the beginning. It takes time to understand the illness you have, what treatment options are available, and how living with illness will affect your life and the lives of your partner and family. But time isn’t the only thing coping with illness takes. It also takes courage.
Being sick is like being on a roller coaster — you can be up and hopeful one minute and down and doubtful the next. Your illness can take unexpected and unpredictable turns. One disease can dispose you to or give rise to another. This can be frightening as well as exasperating. Finding medication that works, being committed to following a good treatment plan and maintaining honest, direct and open communication with your healthcare providers takes time, energy and skill. But this is only part of the picture.
Living with illness affects every part of your life and every significant relationship you have, doesn’t it? If your children are young they may not understand your changed role or presence in their lives. Depending on the severity of your illness, your kids may be afraid of the changes they see and become timid in approaching you. They may ask you or their other parent if you’re going to die. In addition to answering your children’s questions and calming their fears, you and your spouse will probably make a number of role and responsibility changes, both as parents and as partners. The more debilitating your illness, the greater the changes — and greater still the effort toward emotional and financial adjustment, survival and committment.
Being ill and either single or divorced raises a whole other set of challenges to meet and questions to be answered, perhaps with the help of family members or even good friends. Depending on how ill you are and how it impacts your ability to work, changes may be moderate and manageable or many and possibly catastrophic. It’s not uncommon in situations of severe illness for adult parents to return to a caregiving role for their adult children. The adjustment for both can be traumatic.
If you’re still able to work, you find yourself in the position of having to make decisions about what and how much you tell your employer and coworkers, especially if your illness requires you to make time adjustments to your work schedule. Responding to and dealing with coworker’s responses or reactions can be a challenge. Saying too much makes you vulnerable to unwanted questions, saying too little may raise the issue of “special treatment” and elicit criticism or even jealousy. Yet, not being able to work means giving up your role in the workforce as a valued and productive employee — and facing the economic changes and problems of not being able to financially provide for yourself or your family. How many sleepless night has this cost you?
When you live with chronic illness, every aspect of life takes on a new dimension. Your daily decisions and choices are examined through a new lens, and you often find yourself carefully weighing the ramifications and possible outcomes of many of your decisions. But, wait. Wasn’t this the way it always was? Isn’t this something all intelligent and responsible adults do? Yes, of course. However, living with chronic illness broadens the scope of that decision making process. The question isn’t only how will this decision or choice affect you, but also, how will it affect your family and your illness which in turn affects you and the choices and decisions you must continually make and evaluate.
Obviously, the demanding aspects of living with chronic illness are many. Facing them reveals your courage. Why is this so? Because when limitations and diminished control over the effects of illness are part of your daily life, your choices and decisions become the stuff from which courage emerges.
You know this. At the same time you may not think of yourself as a particularly courageous person, but think again — you are. In meeting life’s challenges, you have learned and continue to learn how to face your fears and move beyond them. Take a few moments and look at those circumstances and events in your life in which you have responded with courage.
These five questions will help you.
What values, gifts or attitudes are you developing because of your experience in living with chronic illness?
What initially held you back from being open to developing them?
What happened that helped you to grow and move beyond your constraints?
What positives have you learned from the times you’ve felt most discouraged?
What will your legacy be to those who know and love you?
No one knows the journey you and your illness are making better than you do, and no ones knows more than you, the challenges you’ve met and the wins you’ve achieved. Living with chronic illness may make you different from other people who have their health, but don’t underestimate your courage or what you are learning because you live with illness. In case you’re tempted to forget, just answer the questions you’ve read.
Pauline Salvucci
