The Real Pain of Chronic Illness: When Sickness Steals Your Identity
By Bruce Lambert, PhD
It hurts to be chronically ill. But as anyone with a chronic illness knows, physical pain is only one source of suffering, and it’s often not the worst kind. The real pain comes from not being able to be the person you were before you got sick, and not being able to live out your pre-illness hopes and dreams. This pain seems deeper and more personal than mere physical pain. It makes you question your value as an individual and makes you wonder how you will find meaning and purpose in your chronic life.
Whether it’s a loss of mobility, stamina, sleep, earning potential, relationships or the literal loss of parts of your body, chronic illness involves some sort of loss for everyone. But interviews with people living with many different types of chronic illness reveal that loss of self, the loss of the person you were before you got sick, and the disruption of your future plans, goals and dreams, are what cause the most enduring and challenging types of suffering.
There is a predictable sequence of events that leads to loss of self, and it is important that you learn to understand it so you can learn to recognize it and, wherever possible, learn to stop the unfolding chain reaction before it does you harm.
Why Body Failure Leads to Loss of Self
The loss of self related to chronic illness begins when your body fails you. The illness makes you dizzy, nauseous, tired or irritable. It causes tremors, stiffness, pain, insomnia, constipation or diarrhea. You can’t think clearly, walk easily, climb stairs or drive. These body failures prevent you from doing the things you used to do, like working, cooking, playing in sports leagues, spending nights out with friends, making love or playing with your kids. Many of the things you can no longer do were central to your sense of yourself as a normal, healthy, independent, competent person. In a very real sense, when you can’t do the things you used to do, you can’t be the person you used to be. And as it becomes clear that some of your limitations are permanent, you may realize that the future you had imagined for yourself may no longer be attainable.
Regain Your Identity When You’re Living With a Chronic Illness
To some extent, change is an unavoidable reality of chronic illness. Some of what you lose is gone for good. You must come to terms with and mourn those losses, the same way you grieve the passing of a loved one. But before accepting a loss as permanent, there are steps to take.
1. Try to Reverse the Body Failure
This may seem obvious, but if you’re able to regain your functioning or eradicate some symptoms, then the other problems largely take care of themselves. Unfortunately, a lot of it is out of your hands and this is by no means always possible. However, in some cases, a combination of medication, surgery, physical therapy, exercise, weight loss or gain, the use of an assistive device or complementary and alternative therapies might restore you to something close to pre-illness functioning — or may at least make your life a little bit easier.
2. Modify the Activities You Love
If you can’t regain functioning, see if there is a way to do a modified version of the activities you love that preserves most of their meaning and value. Sing instead of playing piano. Coach instead of being an athlete. Write cookbooks instead of cooking. Recovering from a chronic illness doesn’t mean being exactly how you were before you got sick — it means figuring out what your changed body and mind are capable of and figuring out which activities from your pre-illness life you can still engage in, even if in modified form.
The modified activities may seem less rewarding or valuable than the things you did when you were healthy. But accepting chronic illness involves the uncomfortable process of embracing change, accepting your new reality and making the best of things. The goal is not always to do precisely what you used to do or be precisely who you used to be. For many people that will not be possible. The goal is to find meaning and purpose in your life and to live as fully as you can with the set of capabilities you now have. It is never clear in advance what you are capable of: Trial-and-error is the only way to figure out what your new body and self are like. Courage, determination, persistence, resilience, a dark sense of humor and a good support network are vital resources.
3. Reimagine Your Future
You are the main character in the unfolding story that is your life. Chronic illness crashes into your life like an unexpected and unwelcome plot twist, but you are the author of your own story. The next chapters are yet to be written. As you mourn and come to terms with what you’ve lost, begin to devote your energy to what comes next.
Bruce L. Lambert, Ph.D. is Professor in the Department of Communication Studies and the Department of Medical Social Sciences, and Director of the Center for Communication and Health, at Northwestern University. Follow him on Twitter at @bruce_lambert.
Article originally published April 27, 2016 on Chronicality.com
