Many people believe that everyone lives in the same world. At an event, we all see, smell, taste, or touch the same things, and therefore, our experiences are identical.

But when we crunch the information into something that goes beyond observations, unique worlds—ones we may not understand—are created. For example, two people are listening to a Thelonious Monk CD. The first person, whose favorite musician is Lawrence Welk, hears discordant random notes. The second person, listening to the same cut, is a professional jazz musician and hears an incredible tune embellished by wonderful chords. The same event, but very different perceptions.

As you try to understand people with chronic illnesses, think about the Thelonious Monk- Lawrence Welk example. It doesn’t make sense to talk about an independent reality that’s the same for both you and the person you’re trying to understand.

Unique filters continually shape everyone’s experiences in accordance with their needs, fears, and beliefs. A patient once said to me, “I never know how long the pain will last, nor when it will begin again. No matter what I’m doing, I’m either waiting for it to go away or to start.”

The presence of an illness, either stable or progressive, shapes almost everything that is experienced. The constant presence of something that is life-altering effects people in more ways than non-chronically ill people may understand. The physician objectively talks about the minor changes required by his patient as his strength diminishes. You hear what you’ll need to do to compensate for living with your loved one in a two-story house. Your loved one hears that his life is over.

We often argue with friends and loved ones that their interpretation of what they heard or experienced is not “real,” or they are over-reacting to a situation. We are telling them what they should feel, rather than what they do feel. We are telling them that despite the effects of their chronic illness, their perception of the world should match ours. It doesn’t, and it can’t.

When I was still at San Francisco State University, I treated a young woman who had a stroke and recovered most of her speech and language functioning. To someone who didn’t know her, there were no outward signs that her ability to organize the world was severely compromised.

“Maybe I should wear a sign,” she said, “something like My Brain is Fried.” She went on to tell  me that her “non-chronic” friends continually interacted with her based on how they thought she should experience the world. They would choose restaurants that were noisy, because for them it meant this was a “happening place.” Noise for my client meant it would be an evening of confusion, frustration, and humiliation when she would pleasantly look at someone who was speaking, smile, nod her head, and have no idea what was being said.

A hospice patient expressed similar differences between the world of people who didn’t have chronic illnesses and those that did. He said that as portions of his memory disappeared, he struggled to hold on to his short-term memory. While in the past he could keep a multitude of dates in his mind, now, even with writing them down, he forgot them since he wouldn’t remember to look at his calendar.

When he was chastised by a relative for forgetting an important date, he realized that few people understood how his life was transformed by a chronic illness. His inability to remember was interpreted by the relative as being irresponsible.  For my patient, forgetting the date meant that his chronic condition was progressing. Same event, different reactions. Same event, different worlds.

So the next time you are perplexed by the “over-reactions” or “bizarre behaviors” of someone with a chronic illness, don’t assume that they were being inconsiderate or thoughtless. It just could be that you don’t understand how their illness shapes their world view. You’ll be amazed how far a little compassion, acceptance, and a lot of understanding will go.

37 Responses

  1. Stephanie

    Thank you, Stan, as always, for your insight. You put it so much more eloquently than I ever could over the years. It is a never ending battle to move people to gain an understanding of chronic pain or illness and the limitations they impose. Your article, I hope, will help some get there.

    Reply
  2. Carol Newman

    Good stuff Stan! Some people think their reality is the only valid one, and as you point out, many perceptions abound.

    Reply
  3. judy b.

    Thanks, Stan for this reset – it is so great to be reminded that we all have different experiences of the world.

    Reply
  4. Sue Evans

    A really well-written article Stan and so true. I look forward to seeing/hearing you play at Hike for Hope this weekend. I believe you are coming again. If you would like any specific images taken please let me know.
    Sue

    Reply
    • Stan Goldberg

      Hi Sue,

      Thanks for the kind words Sue. I’ve been so delighted with your pictures last year, I can’t imagine anything could be better.

      See you Saturday.
      Stan

      Reply
  5. Pat

    Good timing, Stan. Thanks. I’m rarely good at remembering this. It reminds me of this scenario. Two people are riding in a car. Do they both see the same things in the same way? Answer: no.

    Reply
    • Stan Goldberg

      Hi Pat,

      My favorite example is the great movie Rashamon. Let me know when you’re coming into the city for your next haircut.

      Take care,
      Stan

      Reply
  6. Chris Luck

    A brilliant article Stan. You have touched on very important issue for people trying to cope with a chronic illness. I often feel that I’m living in a completely different world following my cancer diagnosis. The problem is that people tend to judge others by appearances – if they look they same they presume they must still be the same inside!

    Thanks for your insights.

    Keep well

    Reply
    • Stan Goldberg

      Hi Chris,
      Thanks for the kind words. I don’t think I’d go as far as “brilliant.” “Helpful” will do just fine. And you’re right, people often will only be attentive to what they see–and often the level of observation isn’t that great. I think if folks start off just being more accepting of other people’s view of the world in general, this article would have been superfluous.

      Take Care,
      Stan

      Reply
    • Stan Goldberg

      Thanks Kimberley. Hopefully we soon have a subtitle for LEANING INTO SHARP POINTS. The more feedback I receive on my articles I more I realize that a book for family caregivers that is compassionate and practical is long overdue.

      Take Care,
      Stan

      Reply
  7. Ronee Henson

    Stan, you made a most important point! One that should be taught in all Hospice Volunteer classes!
    Many of us became volunteers because we were Caregivers to a Loved One, which, as you know, is a very emotionally and physically draining job.

    PLEASE!! Write a selfhelp-book for Caregivers that Hospices can give to families or caregivers when a new patient is admitted to their service. You have such a great way of simplifying very necessary information!!

    Reply
    • Stan Goldberg

      Thank you for your kind words Ronee. I am writing such a book. It tentatively is called Leaning Into Sharp Points: A Compassionate and Practical Guide for Family Caregivers. It will be published by New World Library and available in as a paperback and all of the current electronic forms.

      Take Care,
      Stan

      Reply
  8. Mel Goldberg

    Stan
    Great article for many of the reason other have posted (insightful, profound…) I found myself relating to your words beyond the context of the article. Proud of you bro. Mel

    Reply
    • Stan Goldberg

      Thanks for your kind words Mel,

      Yes, those who have experienced the problem know first hand how devastating it can be.

      Take Care,
      Stan

      Reply
  9. Mary Lou Connolly

    Wow! Pretty much exactly describes the epilepsy experience. I will be referring the article to many people. Thank you!

    Reply
    • Stan Goldberg

      Hi Mary Lou,

      The commonalities that exist between various “hidden” problems are vast. And unfortunately people without chronic problems don’t have an understanding how it effects so many things in a person’s life.

      Take care,
      Stan

      Reply
  10. Steven Evans

    Stan,

    As I read your helpful [actually superb, but I’ll honor your request for “helpful”] article, I realized that we are all caregivers — practically all the time. It’s not just for the sick, not just for the obviously illness-compromised, not just for hospice care. Going through life, we are all wounded to some degree. Life is a chronic condition itself. Sometimes apparently not as extreme as when we are struck between the eyes with major catastrophe … but still, we all need the compassion, the understanding, the out-reach that you identify when the situation is more pronounced. We are currently providing not hospice care but hopeness-care for a number of women who lost their husbands. All that you said applies to them, to their pain, to their shattered and altered view of every day. No sickness, per se, but [heart] sickness of another sort.

    So your words of wisdom — yes, wisdom, Big Guy so cope — resonate. And that is the marvel of your words. We know it to be so true when we read them, hear them, think about them. Thanks for bringing the truth back home… where it so belongs.
    Best wishes,
    Steve

    Reply
  11. Katharine Dupre

    Loved the article! Too often we live in our own worlds without understanding.

    Reply
  12. Faye Hadley

    Wonderful article! You have articulated what many of us have tried to explain to others. As a person living with multiple chronic conditions, and most recently, a second bout with breast cancer, it is most “helpful” in understanding why even caring, intimate friends just don’t “get it” about how life is so different for me. And that’s just it – life IS different for me. It’s not about being self-centered or wanting sympathy, just acknowledging that the reality of my daily life is evolving, even from what it was pre-cancer a year ago. This article helps me understand why I, myself, get so frustrated. I’m not the same person I once was – I daily discover how I have changed. How could anyone else understand? I don’t understand myself. But I’m trying… Thanks for the help!

    Reply
    • Stan Goldberg

      Hi Faye,

      I’m glad the article helped and thanks for your kind comments. As difficult as it is for healthy people to understand that other healthy people may live in different worlds, it becomes almost imaginable for a healthy person to understand how the the world of someone with a chronic illness colors their perceptions of everything. One of the main themes of the book I’m just finishing has as one of its main themes that if it isn’t possible to understand the changes, at least accept it.

      Take Care,
      Stan

      Talke Care,
      Statn

      Reply
  13. Jackie Grant

    This is a lesson for life Stan. If only the world of people all realized this. Perhaps they will. I will pass this on…
    Jackie

    Reply

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