Living with Chronic Illnesses and Disabilities

Sherri Connell, herself invisibly disabled, has written this premier book for observers who want to understand what dwellers face. “It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest!”

I highly recommend this book; it would be a great addition to a church library. You could buy a copy to loan family and friends, so they could understand you better.

Order this book from Sherry’s organization, Invisible Disabilities Association or from Amazon.

Look up the IDA website for more information about invisible disabilities.

Joni is the preeminent book on disabilities. This is the 45th anniversary edition of Joni’s story: her diving accident; her slow rehabilitation; her eventual acceptance; her discovery of creating art. It deals honestly with spiritual questions. The book ends with the publicity resulting from her drawings. She went on to form the association, Joni and Friends, a worldwide organization dedicated to helping disabled people and their families. There is also a website called Joni and Friends whose stated purpose is “Welcome! Our ministry is dedicated to extending the love and message of Jesus Christ to people who are affected by disability around the world.”

If you are not familiar with Joni, this book is an excellent source of information about living with disabilities and spiritual questions.

Available on Amazon.

Check out Joni’s website.

An active woman, wife, and mother of two young boys, Carole worked part time as FJ attended graduate school. Two years later, undiagnosed pain and weakness dominated her life; she was still a wife and mother, FJ had graduated, she had everything to live for, but she would never again be able to lead an active life. FJ and Carole are uniquely qualified to co-write this book having lived over 40 years with her unstable, progressive, invisible disabilities. Carole writes from her standpoint as the person affected by severe limitations while FJ writes from his perspective as the spouse and caregiver. FJ’s professional background as pastor and Army Reserve Chaplain coupled with his experiences coping with his wife’s ordeals provides an unusual perspective as he coauthors this book.

FJ and I use our forty-plus year journey, detailed stories of three other families, and short input from still others to showcase life with invisible disabilities. These families represent a variety of challenges. We present this book from the family’s viewpoint since these conditions affect the whole family.

FJ and I recount our story in depth, along with lessons learned and unlearned. The remaining chapters deal with problems, tips, and suggestions for solutions in the areas of practical issues, emotions, relationships, and spiritual questions.

As the title suggests, we represent our lives in weather terms.

Availability

Available on Amazon and other online retailers.

For more info about our book, see Our Books.

Suzan Jackson’s Finding a New Normal: Living Your Best Life with Chronic Illness pictures living with chronic fatigue syndrome (ME/CFS), and several other chronic illnesses, for 20 years. Her two sons developed ME/CFS while children; one son no longer has it, but the other also contracted Lyme disease. So, Sue speaks from in-depth experience as she seeks to help others.

This book is especially good for people with newly diagnosed unending conditions; it will demonstrate that you can survive and thrive, still having a purposeful life. And it is helpful for those who are having difficulty coping. She includes lessons she has learned and tips resulting from those lessons. Sue also incorporates advice for parenting chronically ill children.

Emotional coping

“Riding the Chronic Illness Roller coaster,” deals with our changeable emotions, especially the stages of grief and depression. Sue presents “some coping mechanisms I’ve developed to help steady and lift my spirits when despair drags me down.”

She talks about taking one day at a time, balancing hope and acceptance, and asks what you are looking forward to. Sue suggests the need to roll with the punches and proposes that you may be right where you need to be. She speaks of parenting a chronically ill child. She challenges you to think about how your illness has changed you and talks about spring cleaning your spirit. Each of these sections comes with specific suggestions for dealing in these areas.

Daily life

Sue talks about the need to find joy in each day and explains her “Joy Journal.” She deals with “Plan B” days: “You know what happens when you push past your limits with chronic illness: you wind up flat on your back the next day—and possibly for many days to come. … My way of coping is to call it a Plan B Day and to change my attitude accordingly.”

She recommends getting outside, even for a few minutes. Spending time reading and playing and celebrating is beneficial. She talks about ways to travel successfully.

Sue recognizes a huge problem for us:  “Even when you are doing something you enjoy or spending time with people you love, your mind is constantly reviewing your symptoms and status, considering your restrictions, and adjusting your body to meet your needs. This isn’t neurotic; it’s necessary. Eating the wrong food, doing too much, or just standing for too long can result in serious consequences that last for days or longer.” But sometimes we can forget, and she suggests ways to take advantage of those times.

Relationships

Sue covers a variety of aspects concerning relationships. She includes how much to tell others and how to keep up relationships when you’re so isolated. And she has two sections, with practical ideas, on parenting a child with chronic illness.

Finally, she ends with fascinating thoughts covering setting goals and envisioning your future. She refers to expanding your world with online learning, including an array of resources.

Summing up

This book expands on all these ideas with specific tips to aid you in living your best life.

So, all-in-all, Carole recommends this book not only to those undergoing their own challenges, but also to family and friends of these people.

Check out her websites about living with CFS and about books.

Available at Amazon.

Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body tells the fascinating story of a perfectly normal boy who in the space of a few weeks became totally, profoundly disabled, and unable to communicate. He recounts his journey of becoming aware of the world around him, still unable to communicate in any way. Eventually, he triumphed – with the help of others – and became a functioning, communicating, though still profoundly disabled, man.

The title results from his institutional experiences where his lamentable treatment made him feel like a ghost.

This story is certainly worth your time to read.

Available at Amazon and other booksellers.

Sittser lost his mother, wife, and preschool daughter in an accident caused by a drunk driver. He chronicles how he survived and overcame. He includes stories of others, also.

Read how Sittser and his other children dealt with their overwhelming grief throughout the years.

I know this isn’t about chronic illness or disabilities, although intense grief disables at times. Read this book and discover how much of the lessons that he learned can be applied in our lives.

This book powerfully impacted my attitudes about pain and loss.

Available at Amazon.