Chapter 1 - ILLNESS, Section 2

~~~~~~~~~~Depression~~~~~~~~~~

When I was growing up and people would come over to our house my dad would tell them, “Take off your coat and stay a while.” Sometimes I feel like discouragement has taken its coat off for a nice long visit. I don’t believe I’m alone in my experience with depression it seems to be pretty common for people living with chronic illness.


Depression comes from the grief of not being able to do the things that were once commonplace. When we don’t have enough energy to do all of the things that helped us feel accomplished in the past we struggle with feelings of self-worth. Depression comes from guilt for not doing more, shame for not being more, fear of wondering if body and mind will ever get better, and the sense of hopelessness when treatments fail.

Depression messes with our perception of the world around us and of how we fit into that world. It throws questions in our faces that don’t have reasonable answers. I sometimes wonder why my mind isn’t stronger so that I can convince my body to do things it refuses to do, or exactly what it is I am supposed to do with an illness that saps all the energy out of me. These are despairing thoughts that come to me when I’m the most tired and worn down from chronic discomfort.

Every person with chronic illness is most likely going to deal with his or her situation differently than another and some are going to have more depression than others. Some people are more introspective, some tolerate pain better than others, some have a stronger support system of family and friends, and some are simply more vulnerable to depression biologically.

Everyone is unique, and something that works for one person may not provide the same relief for another. Some people are able to find medication that works well for them, others have to search further to find the help they need, and still others have a very long road to travel down with many obstacles to overcome on their journey toward recovery. We all have our own stories and each one is significant and meaningful because of the experience it presents.

I have days that are better than others, but there are days when the storm hits and the sun can’t get through. There are people who don’t understand this feeling and believe that someone who is depressed isn’t grateful for life. Yet, I do know that gratitude is strong medicine because it keeps me hanging on when I feel battered and bruised by the darkness of depression. One of the things that people on the outside of depression may not understand is that on the inside of depression there is disparity between knowing we have extraordinary blessings in our lives and still finding it hard to be happy all of the time.



When I tell any truth, it is not for the sake of convincing those who do not know it, but for the sake of defending those that do.
William Blake



We all deal with illness differently and have different perspectives about how it is affecting our lives. Some people are going to suffer from depression in deeper levels than others. Each of us has different things that contribute to how we feel about our illness and how we deal with our depression, but we have the same feelings in terms of pain and sadness.


The purpose of this book is to offer a sense of relief from knowing that you are not alone in your experience with chronic illness and depression. I am writing to individuals with chronic illness who have symptoms that are challenging to deal with and to those who have feelings of grief, sorrow, pain, and despair. We all need to understand that while we are working through feelings of depression there is hope, we are not alone, our feelings are significant, and our lives have meaning in the midst of our illness. To feel a sense of purpose and know that our lives matter is such a hard thing to grasp when depression is upon us.



“’Your soul is like your shadow,’ she said. ‘Sometimes it just wanders off like a butterfly and that is when you are sad and that is when you get sick, and if it comes back to you, that is when you are happy and you are well again.’”
Anne Fadiman, The Spirit Catches You and You Fall Down, A Hmong Child, Her American Doctors, and the Collision of Two Cultures




***Summary***

Some of us have to deal with depression swirling around our illness and zooming in when we feel the most vulnerable from our ongoing symptoms. Other people may not understand our feelings, but we are not alone when we experience pain and sadness.

It’s very hard to find the right words to explain how we feel sometimes, but I wonder if there isn’t a reason for our not being able to precisely explain everything we are going through. The process of trying to describe how we feel and make ourselves understood may help us better understand our selves. I’m not saying this process is pain free because it isn’t. Learning to deal with feeling misunderstood is part of our life when we are living with a concealed illness. People can’t see why we are sick and their expectations don’t always match our ability to perform. It's just downright frustrating sometimes.

Our individual perceptions are unique and complex. When chronic illness unexpectedly enters our lives we have to take a step back and learn how to deal with our specific situations. We are each going to find different ways of coping and different ways of trying to fit the pieces of our personality into the world of illness.



All truly wise thoughts have been thought already thousands of times, but to make them truly ours, we must think them over again honestly, till they take root in our personal experience.
Johann Wolfgang van Goethe




*Thought questions*

• What do you think people who feel depressed have in common?

• How do your feelings about your illness affect your level of depression?

• What are some of your coping strategies that help you feel a little bit
better?

Introduction to Carry On, Living with Chronic Illness and Depression

INTRODUCTION

A long time ago my Grandpa Burris had a friend named Pete Somati. I’m pretty sure Pete was Italian, but being a kid I didn’t really pay attention to those kinds of things. Because of Pete’s accent there was some controversy over the name of his dog. People would ask Pete what his dog’s name was and he would say, “Roosty”. The person would then say, “Oh, Rusty.” Then Pete would say, “No, Roosty.” And the person would repeat, “Yes, Rusty.” And this would go on for quite some time, according to my grandpa. You may be asking what this story has to do with anything, especially this book.

I’ll tell you. I’ve been concerned since I started writing that I wouldn’t be able to find the words to truly express the desires of my heart and my story would be misunderstood. I wrote it anyway. Just like Pete continued to call his dog Roosty, no matter what anybody else said.

I kept writing for people living with chronic illness and/or depression hoping they might find something in my story that could help them. Hopefully, my insights will generate a different way of looking at depression. I want to validate the feelings and the lives of people who are enduring pain. I wrote this book for all the people with unheard voices who need to feel like their lives matter.

One year on Christmas Eve when I was a little kid my Grandpa Tanner put a wooden duck in the snow out on our front lawn. He told me that Santa must have put that duck out there since there weren’t any footprints in the snow leading out to it. I was pretty little, but old enough to be confused about what a wooden duck had to do with Santa, yet mystified about how that duck got out there with no footprints around it. I couldn’t help wondering why Santa would leave us a wooden duck. Once again, you’re probably wondering what this story has to do with anything.

I’ll tell you. Living with chronic illness is a mystery that most of us are trying to understand. How did we get it? Why do we have it? What are we supposed to do with it? In other words, why did Santa leave us a wooden duck?

Sometimes the thoughts we have about ourselves when we are in pain can be destructive to our spirits and it isn’t easy to turn them off. I want people to understand that pain is meaningful. If you are living with painful symptoms from a chronic illness your endurance is evidence of strength. With hope we somehow get ourselves through each day, one after the other. Even when we question our faith and the power of our prayers we keep holding on the best that we can.

When my sister was little she would dance a little jig and when she was hopping around my grandpa would tell her she had ants in her pants. Everyone thought that was funny until the day she literally had ants in her pants. It’s true she really did have ants in her pants. What does this have to do with the message of this book?

I’ll tell you. While we are figuratively dancing around with our illness there will come a day when we will see the literal power of our faith, the meaning of our pain, the strength of our endurance, and the literal feeling of hope in our hearts. If we are doing the best we can, however much that might be, we have to give ourselves credit for the goodness we have in our hearts. We didn’t expect an illness to come into our bodies and change our lives so dramatically but hope keeps us going from one painful day to the next even when we don’t know it’s there.

I’ve included quotes, poems, scriptures, and excerpts from books throughout the chapters. I’ve tried to place them so they blend in with the concepts I’m presenting, but some people may still find them distracting. You know who you are, so just skip them. There are blank pages between the chapters for you to add your own favorite quotes, poems, thoughts and feelings. You can also use these pages to argue with something in the chapter that you may disagree with. That’s always fun.

I cannot remember the books I've read
any more than the meals I have eaten;
even so, they have made me.
Emerson



I have tried to use short paragraphs because I know how difficult it can be to stay focused when we are feeling extreme fatigue. Sometimes it’s hard to concentrate when we have a headache, and for some people the neurological problems that accompany their illness can make reading a maze where it’s easy to get lost. I’ve tried to summarize the sections in each chapter as well as the chapter itself. For some of you this may seem repetitive, but for others it will be helpful.

There are references to my personal belief in God in this book. I grew up in a home where I watched my parents live according to their faith, and over time came to develop my own relationship with God. My words are not directed toward any specific religious denomination, but to a universal expression of faith and hope. I have used verses from the Holy Bible and have chosen to use the King James Version because that is what I grew up with. I sure hope that I don’t sound too preachy. I am the first to admit that I do not have all of the answers to life and I can’t pretend to fully comprehend how God works.

At the end of each section in the different chapters I have included some thought questions. These are questions that you can think about to help you work through some of your feelings about living with chronic illness. The questions are listed again at the end of each chapter. Take your time and perhaps write down some of your thoughts and feelings.

I wanted to add something to help make this book more interactive and personal. I hope that sharing some of my personal thoughts will trigger a sense of freedom in your heart. I know what it’s like to keep my true feelings to myself while living with a concealed illness, and that’s why I think it’s important to open our hearts to pure honesty when we feel safe and comfortable. I hope that by
sharing my story you will be inspired to share some of your feelings and stories.

I hope you find a few favorite passages in this book that you can read when you need a little bit of strength to help you through a tough time. Please add some of your own favorite quotes and whatever else you need to make this a resource of hope and relief. Life is a powerful teacher and we’re learning how to get through it one step at time.






If all mankind minus one, were of one opinion, and only one person were of the contrary opinion, mankind would be no more justified in silencing that one person, than he, if he had the power, would be justified in silencing mankind… If the opinion is right, they are deprived of the opportunity of exchanging error for truth: if wrong, they lose, what is almost as great a benefit, the clearer perception and livelier impression of truth, produced by its collision with error.
John Stuart Mill



Carry on!