I had been an Occupational Therapist for nearly a decade before I became too ill to work. Prior to the decline in my own health, I had seen patient’s with a wide variety of diagnoses — rare brain tumors, cancers, Multiple Sclerosis, and Scleroderma just to name a few. Although the pathology of these illnesses are all quite different, it did not matter if an illness was acute, chronic, visible or invisible. Illness was still illness and it’s plight was not easy on anyone. I learned this fact early on in my career. I also knew that at no time could I truly relate to the variety of illnesses the 1,000+ patients I had seen, endured on a daily basis. Where I may have fallen short in my personal experiences with my patients’ illnesses, I made up for with sensitivity, imagination, and the genuine desire to help.
Over the past few months, I have observed a trend amongst bloggers, online forums and support groups of chronic illness sufferers feeling increasingly more misunderstood by family, friends and doctors. I often hear phrases such as, “They just don’t get it.” or “If they could walk a day in my shoes, maybe they would understand me better.” Obviously, there is no substitution for the experiential knowledge gained by actually enduring a chronic illness. Unfortunately, it is unreasonable to think that most people in the lives of the chronic illness sufferer will likely ever encounter the same unique set of circumstances. Consequently, patient’s feel lonely and isolated. Families become confused because they don’t know how to help. Friends may disappear because they no longer know the “right” things to say. Doctors are often too busy to really have the time to listen to the needs of their many patients.
So how do we stop the trend of the chronically ill feeling perpetually misunderstood? Can we, as family and friends, actually view our ill loved one with new eyes? I believe the answer is “yes.” I often refer to symptoms associated with a chronic illness as The Revolving Door Theory where symptoms seem to cycle in through the door one minute, and cycle out the door the next. Rather than seeking to solve the persistent list of revolving symptoms or criticizing your loved one for having them, try a new approach. Be willing to help improve their quality of life by displaying empathy, love, kindness and compassion. A few simple actions can help sustain those of us on the lingering and unpredictable path of chronic illness to experience a better quality of life.
On the next blog post, I will list ten ways in which those close to me have demonstrated empathy, love, kindness and compassion during my long battle with Lyme Disease.