It is natural to hold onto memories of what gave us joy, whether that involves experiences or images of friends and loved ones. However, when something, such as a chronic illness, makes the images fade, we either adjust to the new reality or pretend the changes haven’t occurred.
As a caregiver counselor, I’ve watched clients come to the realization that the person they loved, depended on, or shared experiences with was drifting away because of a chronic illness. Some adamantly refused to see the changes in their loved one’s attitudes and behaviors, maintaining “Even though grandpa has Alzheimer’s, it’s still him inside that body.” Others eventually realized that the person they knew—sometimes for a lifetime—was gone and someone different had taken their place. Below are what I call “pearls of wisdoms,” seven lessons my clients taught me on adapting to the inevitable changes caused by chronic illness.
1. Be Less Concerned With Labels and More With the Effects of the Illness
We are often told that labels should not define people. The person with Alzheimer’s is more than her cognitive deficit. The asthmatic is more complicated than a person who has difficulty breathing. The stroke victim who lost the ability to speak is “a person with aphasia” rather than an “aphasic.” Yes, people are more complicated than the labels used to identify them. However, whether we call someone who had a stroke “aphasic” or “a person with aphasia,” it will not affect their ability to retrieve the names of grandchildren. It is more fruitful to understand the effects of chronic illness than becoming a language cop.
2. Don’t Base Your Expectations on Pre-Illness Behaviors.
Life, in many ways, is about expectations. We expect an apple to taste sweet, cars approaching red lights to stop, and bad guys to be punished. You expect your compassionate aunt to console you when you tell her about the death of a close friend. You expect your reserved father to be unemotional when you share the same information. Without expectations, the world becomes as confusing as Alice’s Wonderland, where what is white today will be black tomorrow. Unfortunately, we often don’t change our expectations when an illness has significantly modified a person’s world. But we should.
3. Chronic Illnesses Change Identities.
Identity is based on an amalgam of experiences, values, abilities, and expectations. We are what we experience, believe, and do. Add something traumatic or take away something significant and identities change. As a caregiver counselor, I often heard statements such as “Yes, he has Parkinson’s but that doesn’t change who he is.” The assumption is that “the core” of a loved one is still present even if cognition, attitudes, and behaviors have fundamentally changed. As comforting as that thought may be, it minimizes the effects of a chronic illness. You do not interact with a core but rather a complete individual. As the illness progresses, either in duration or severity, identities continue to evolve.
4. The Effects of a Chronic Illness are Rarely Stable
A client who was dying once said to me, “Every day I feel as if I’m on one of those exercise boards that rest on a ball. Just when I steady the damn thing, it starts moving, and I’m struggling again to balance myself. Why don’t people realize that’s what my life has become?”
I’ve heard similar descriptions for thirty years from clients and patients living with chronic illnesses. Many believed that they have to deal with the effects of their impaired condition and the unskillful acts of friends and loved ones who didn’t understand how unstable their life had become. Avoid thinking about a diagnosis or initial stage of a chronic illness as stable. Chronic illnesses will continue to affect the stability of a person’s life as the disease progresses.
5. The Effects of a Chronic Illness are Pervasive
The presence of an illness, either stable or progressive, shapes almost everything that is experienced. For example, a person who uses a wheelchair because of a muscular disorder was thought to have “adjusted” to his condition. Following the illness, he became a well-known university professor, father of three successful children, and appeared to minimize his disability. Yet, every time he approached a crosswalk with no ramp, his illness-based disability became the window through which he saw the world. The effects of a chronic illness can’t be abstracted from a person’s life—it is an integral part of it.
6. Losses Change Identities
The feeling of losing something that gave life meaning is profoundly upsetting. Unfortunately, the magnitude of a loss is often thought of in terms of someone else’s belief in what’s important. An active person might think that no longer being able to walk is tragic, but the inability to knit is inconsequential. Yet, for someone with rheumatoid arthritis whose entire life is centered around knitting, the loss is devastating. The ability to knit may disappear, but its memory is piqued by a ball of yarn. Any loss or trauma that someone maintains is substantial, by definition, is and will change a person’s identity.
7. A Life of Uncertainty.
For many people with chronic illnesses, predictability may be elusive. One day, the illness is controlled either by medication or who knows what. The next day, it comes on with the power of a sledgehammer. On good days, although there’s jubilation, there’s also the fear that the reprieve will end. On bad days, there’s the fear that it will persist and never relent. Expect variability in behaviors and attitudes.
So will the use of these seven pearls of wisdoms make you more understanding and compassionate? Yes, but don’t expect perfection. Like the dying person who compared his life to balancing on an exercise board, “certainty” is an elusive concept when it comes to chronic illness.