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.

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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.

4 Responses

  1. Kim Carter

    Hello Stan, really interesting read. I’m a clinical psychologist in Australia & I now see clients with chronic illnesses. Why? Because 2 doctors missed my positive test to coeliac disease and I then went on to suffer 8 years of significant decline to the point that I had to give up my clinical psychology practice, and was bedridden 75% of my time because of debilitating fatigue, weakness, brain fog, palpitations etc. This is a terrific article because it made me realise something: this is me. I’m not the person I was 11 years ago and that is something that I still haven’t processed. I am 80% to 90% improved and for that I’m extremely grateful but I refer to those 10 years in all of debilitating illness as my protracted near death experience. It changed my life for good: I got out of an unhappy marriage. But it also took away my positive outlook and sense of security about the future. I am still processing that. But what interested me was the fact that you’re absolutely correct: while I am aware of the changes in me, others around me are completely unaware, including friends and family. And for those people who are still in the middle of a chronic illness, all that you said is true: everything is changed in your life, every day. My diagnosis is coeliac disease and while that seems trivial to many people, (obviously there are many worse diseases,) my life is changed. Imagine how much more difficult it must be for people with serious illnesses?
    May I reprint this article on my web-site acknowledging you as the author? I’m happy to give you my url privately, best, Kim

    Reply
    • Stan Goldberg

      Thank you for your kind words Kim. Yes, you do have my permission to republish the article. I think a great disservice is done when people who are do not have a chronic illness tell those who do that they are still the same person they were before the illness. Although said with the best intensions, it avoids a basic fact: Our personality (e.g., who we are) is partially determined by what we do. To ignore this, places pressure on the person with an illness to act as they did prior to having their life disrupted.

      Take Care,
      Stan

      Reply
  2. Tish

    Thank you for this. I was diagnosed with RA a year ago, and was bedridden for 7 1/2 months, until I finally got medication. My wife is my care-giver, so we both have been trying to adapt and adjust to my “new life/reality.” Newly diagnosed with extreme osteoporosis in my wrists and one hip, we’re reeling. I appear to have a disintegrating infrastructure. Your “Pearls of Wisdom” should help us as these chronic diseases progress.

    Reply
    • Stan Goldberg

      Hi Tish,

      So sorry to hear about your RA. I have friends who also have the problem so I have an idea of what you and your wife are going through. I hope the article will be helpful to your wife and others. I’m sure nothing in it is new to you. If you or your wife have a chance, you might want to look at some of the other articles I wrote on chronic illness and caregiving. Take care and thanks for taking the time to respond.

      Stan

      Reply

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