Although I work in pediatrics now, I spent the first 10 years of my career in adult ortho-neuro rehab. This means that I worked with many young adults facing issues from RA, MS, Lupus, spinal cord injuries, and more. They were just getting started with jobs, raising children, and making an adult life, but they had to deal with chronic disorders that impacted every part of daily living. And their needs were different in some ways from the older patients, who developed issues in their 60’s and 70’s or beyond. THEIR children were grown, their careers were often over, they had saved for retirement, etc.
Why am I writing a review on a book about ADULTS? First, many of the kids I treat will grow up to be adults with chronic issues. Their parents may or may not acknowledge this at 3 a.m., when they think about their child’s future with some fear in their hearts. Second, the PARENTS of some of my clients have their own issues. Sometimes the same ones, but sometimes lightning does strike twice, and the child has a different issue or issues from the parent’s own concerns. Either way, people want ideas and the feeling that they aren’t the only ones dealing with these issues.
This book is written by Laurie Edwards, who faces a chronic respiratory illness with a combination of determination and honesty that other adults with chronic illness will find refreshing. She isn’t shy about describing how it has affected her relationships or her ability to look at her future. But the book includes many other stories. Within the book you will meet a college student with Ehlers-Danlos syndrome, a young mother with another respiratory illness, and others with common and uncommon diagnoses.
Chronic disorders or illnesses can make immediate decisions harder, but they make plans for the future harder as well. I have felt strongly that teens with chronic illnesses need to plan their careers based on more than their talents. The realities of living in the US mean that having health insurance isn’t a given. Having the ability to take paid leave isn’t either. The “gig economy” isn’t kind to people with chronic disorders, and until our country decides to change this, it is important to choose education and training that will allow a person with a chronic illness to obtain good care. It really can be a “life or death” decision.
Ms. Edwards also takes on the decision to bear and/or raise children. Although there aren’t any specific strategies offered, she walks the reader through her process, and the decision-making of other people with chronic illnesses and conditions. One of the great gaps in care, IMHO, is care for mothers with chronic disorders. Raising children is hard work. Hard physical work, hard mental work, hard emotional work. Lots of joy, but lots, and lots, of work. Protecting their health when faced with their child’s needs often means that women sacrifice themselves and do not realize that there are options that reduce risk while being the great moms they want to be.
The lack of useful information from the therapy community is just astounding. We know a great deal that could make life easier, but there isn’t anything available to parents unless they are lucky enough to have generous health care coverage that provides them with therapy sessions. I have found YouTube videos on lifting and carrying kids when you have physical disabilities…none by therapists. We know so much about this topic, but parents seem to have to figure even this simple thing out for themselves. When understanding the principles and their own abilities could make them empowered to plan for each situation as it comes along.
For more information, read Career Planning for Teens with JRA, EDS, and Other Chronic Health Issues and Parents With Disabilities Need The Happiest Toddler on the Block Techniques . To read posts about children that have relevance for adults as well, read Why Joint Protection Solutions for Hypermobility Aren’t Your Granny’s Joint Protection Strategies and When Writing Hurts: The Hypermobile Hand .