Life Interrupted: coming to terms with a chronic disease diagnosis
There is no doubt about it, a chronic disease diagnosis can be devastating! After four years of increasingly severe symptoms, I wasn’t wholly surprised that I received a diagnosis like Crohn’s disease, but reflecting on what led up to this moment, I became very disappointed with myself.
For one thing, I’ve always identified as “healthy”. I genuinely made make good dietary choices, avoided processed foods and drive-thru’s, exercised and practiced yoga. As a mental health counselor, I knew all about the significance of self-care, believed in it passionately, and strongly addressed its importance with my clients. Yet, my own life was awash with chronic stress. Little by little, I relinquished my healthy lifestyle convictions, eating whatever took the least effort to prepare, developed a nasty sugar habit, and was too tired to do anything about it. I kept telling myself that any day now I’ll regain a modicum of control over my life, get a good night’s sleep, my symptoms will clear up and I can enjoy life again. If things had gone as planned, I’d not be writing this right now!
When we receive a chronic disease diagnosis, we go through spectrum of emotions as we mourn the loss of our good health. From now on, our lives are unavoidably interrupted by the disease and psychological changes are inevitable. Chronic disease by nature is unpredictable: it can force us to change plans at the last minute, special dietary restrictions can feel isolating, pain or other symptoms can interfere with normal, daily functioning, relationships with others are forever altered, and we can lose our sense of independence. All this can take it’s toll on one’s self-esteem.
For me, one of the greatest adjustments was to come to terms with the loss of my pre-diagnosis identity. Chronic disease indeed changes the way we view ourselves and how we approach every day life. If you are living with a condition that is invisible to the rest of the world, it is hard to receive support and understanding from those you interact with daily, leaving you angry and frustrated. Just when you need to feel hopeful, you feel helpless, resentful and damaged. Coping with the new lifestyle, drug-side effects and other health accommodations is overwhelming enough and the new disease identity isn’t helping much either!
But we prevail. With time, we come to accept and embrace our new identity and learn to navigate our new way of life effectively. By taking ownership of your disease, you can create meaning and purpose from the diagnosis that changed everything. Educate yourself about your condition and take care of yourself the way you would take care of someone you love. Treat yourself with loving kindness, and forgive yourself for the bad lifestyle choices you made that landed you in this mess in the first place. It’s ok to grieve, to feel angry or guilty, but maintaining a focus on what you’ve lost can make you lose sight on how much you have gained, and the person you’ve become since you were first diagnosed.
In my experience, having a chronic disease has it’s advantages. Leading up to my diagnosis, my life felt very out of control and something drastic had to be done about it. Crohn’s provided me with the excuse I needed to slow down and really attend to my needs for the first time in many years, or perhaps my whole life. I had held impossible expectations of myself and was overly concerned about the expectations of others. Now, I relish in being able to say “no” and to explore my authentic self. Opting for a natural treatment approach, I follow a diet and lifestyle strategy that is both nourishing and restorative, rather than going down the conventional route of prescription drugs and surgery. I was strongly advised against this, but have experienced amazing recover in less than a year, and I love the new foods I eat!
Yet, there are times when I feel regretful that I didn’t put these healthy habits into practice sooner. Perhaps I might have avoided this ghastly disease altogether. But I choose to stay away with the should’s and what if’s, and endeavor to keep focused on the present, and not worry about the future. Moreover, my wish is to remain grateful in all things, no matter how small or mundane. Gratitude puts everything in perspective!
Sometimes, I miss the “healthy” me, but I let her go. Without Crohn’s, I wouldn’t appreciate what it means to experience healing and recovery. I’ve gained community with others who struggle similarly, I’ve learned that I stink at stress management despite my counseling training, and become aware that I hate when people feel sorry for me. But I can laugh at myself and have the ability to find meaning in tragedy. In all these things, I can be thankful for my diagnosis and the person it has prompted me to become.