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Care, and the Trust in Care – Part One

Care, and the Trust in Care – Part One

There are a number of examples of what care means in the dictionary. I chose to write about what I see as care and the idea of trust in care. In my own travels living with various illnesses and most particularly hep c I have come to an understanding and belief that care and trust in care is key to having the best possible result.

I have heard from many people in the hep c community who talk about how their doctor doesn’t care, their family doesn’t care, spouses or partners don’t care or understand. I know that these things are difficult and painful to think and feel. I have personally felt like nobody cared at various times in my own journey. I have come to the conclusion that it is less about them not caring for my own well-being and more that they simply don’t understand what we go through living with hep c. The stigma, the pain from illness for some can be debilitating. The progression of disease can cause any number of symptoms and conditions that are well known, and some that are less studied but are very real to the person experiencing them.

People would ask me “How are you doing?”

At first I would tell them the truth about the nausea and joint and muscle pain, the fatigue -terrible fatigue- and sometimes they would say “I feel that way too, we are not getting any younger.” At other times they would kind of glaze over as if to say with their body language-in their minds – here we go again…

Very few wanted to hear it, especially over and over. I decided to simply say “I am fine thanks.”

Does this mean they don’t care? I decided that was not true for the most part. They simply don’t know what to say! We all know people who are incapable of empathy or caring about others, but they are few in numbers- we hope.

I have reacted in the same way to people I know who have been diagnosed with life threatening illness like cancer. I felt like I was without words, and for me that is really something, and those that know me will attest to my willingness to share my own thoughts.

Do others care?

For the most part I believe they do. We are not all the same as we know. We have some differences that make us all unique, but ultimately we have far more in common that is different.

How we react to any given situation is going to be colored by our own life experiences, and there is the age-old discussion about nature and nurture; things we learned and things we have imprinted on our DNA.

I will not delve into that here, and after all who is right?

Is it right to care? Yes it is!

What is the roadmap and who owns it? Nobody.

Are we wrong to expect that others care about our illness and struggles to find wellness? No we are not.

Will people respond the way we want or expect them to?

Not often, as I have experienced.

Does this make them bad people? No, I don’t think so. This is a piece of why I became involved in spreading awareness about hep c, and it has been one truly amazing journey to discovery. Discovering and learning is key in creating understanding, and understanding leads to an end to stigma and discrimination, which leads to a more caring society.

This is what I hope for. This is what we all hope for if I can be so bold to say.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • VA
    4 years ago

    I so appreciate how these simple truths are expressed in a way all of us can understand. So grateful for this forum, and hope that Part One is just the first of many more posts to come. Overcoming feeling alone and isolated is such an important element for us … especially for those of us who may not have a compassionate support system. Glad to have some guidance here Daryl.

  • Daryl Luster author
    4 years ago

    Thanks VA, I try to write in an accessible way, about things that effect us, so that all of us can understand clearly. As someone with lived experience I try to present as part of our community.

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